Friday, October 29, 2010

Cycles of Grief and Parenting a Child With Special Needs

Jennifer Minnelli, M.S., CCC-SLP 

The grief process, for a parent coming to terms with having a child with special needs, differs from the grief process that one might undergo with the death of a close family member. At a certain point, with a death, there is the finality of the headstone, and the cold absence of that dearly beloved person. However, with a child with special needs, parents and siblings can cycle through the different parts of the loss, depending on what is going on developmentally with the child, and what is going on within the family or the community.

Here are some examples of the Stages of Grief (Kübler-Ross) married with my own personal self-talk:
Denial: “This is not my child. She can do what you're asking, under the right conditions. No way is my child in the same developmental category as that. I completely disagree with the diagnosis. I guess it's me and my child against the world...

I was in denial for most of my child's preschool experience. It made it hard to engage with her teachers in a way that supported my child.

Anger: “Damn this situation!! I hate myself, this child, her dad, my parents, and everyone else in the world! This sucks! Why is everything always so hard on me?? You stinking neurotypical brat!!
Feeling stuck on my anger for several years wasn't helping anyone. It was especially hard on my marriage.
Bargaining: “If the sun, moon, and stars align themselves, and I am a good mother who serves only gluten-free items, and follows through with the sensory diet, then my child will miraculously, magically become neurotypical. Did you see that? She just made eye contact! Those clinical psychologists don't know what they're talking about!” 
This thought pattern made it difficult for me to realistically support my child with strategies or to seek help for her.
Depression: “What's the use? Nothing I can do makes any difference. Nobody cares about me. Nobody loves me or my child. My child is who she is, and there's nothing I can do about it. The world sucks. I might as well sit in my messy house and let my kid stim on this talking stuffed animal.” 
I was immobilized when feeling this way.

Truthfully, these different themes have played themselves in my brain, from day to day, for the last six years -- it was painful.
Acceptance: “My child has some amazing strengths. There is a place in the world for her. I will do everything in my power to make sure she has what she needs to live a productive life.”

This is balance between recognizing what's really going on but also persevering and engaging with the reality of our situation.

Getting Help

I believe fully in the idea that everybody has demons and skeletons (it being October and all). We can all benefit from good mental health services, as parents, children with special needs notwithstanding.

You need to be on top of your game to take care of both your child with special needs, and your neurotypical child(ren). Not to mention your marriage, or partnership. When you're not feeling great, it's difficult to make lunches and do laundry, let alone care for others' emotional needs, and referee the complex dynamics in a family system.

A True Story

I've struggled with chemically-based depression for my entire life. However, there's still a real stigma attached to the mere mention of mental health illness. So, it hasn't always been easy to find the right kind of help, or even admit that I need it.

From my first pregnancy to my second pregnancy and then on to when my oldest was diagnosed, I cycled through several episodes of grief, depression, bargaining, and anger. When my daughter was in first grade, after two years of good counseling, support, and lifestyle changes, it hit me. I still felt terrible. I didn't want to feel terrible, and I didn't want to be on the roller coaster of feeling sublime when she had a great day, and down in the dumps when she had a hard one. I cycled through all the stages of grief, sometimes within a single day. It occupied my thoughts, put a strain on my brain's ability to function, and ultimately, left me at a dead end. 

One day I finally went to Urgent Care and told the doctor there that I was having an acute depressive episode (which I was). At the time, I had only a counselor who supported me in this choice, but I was not getting regular medical care from a primary doctor. I was lucky that the urgent care doc believed me, prescribed something, and made me promise to find a regular doc to manage the outcome with the prescription.

I will probably be on the meds for the rest of my life. And that is fine with me. The meds keep the lows from getting too low, and keep me grounded in the reality that my child is different from other children. But here's what else they do: they open up all of this space in my brain to help fight the good fight for my child and for other children and their parents. They help me navigate challenging parenting dilemmas. They help me see the best in others, and find the positive in people.

The Dalai Lama talks about happiness as the very purpose of our lives, and I am starting to understand what he means.
“I believe that the very purpose of our life is to seek happiness. That is clear. Whether one believes in religion or not, whether one believes in this religion or that religion, we all are seeking something better in life. So, I think, the very motion of our life is towards happiness…”
In our family, things run much more smoothly when we have a plan in place that is supportive of my mental health. This includes medication, optimal sleep, down time, time to write and work, time to exercise, and an organized living space. And let's not forget date-night! My brain needs these stabilizers in place to manage the rough afternoons when the play dates don't work out, to problem-solve sibling rivalry, and to find creative, conflict-free ways to keep my kids media-free for several hours at a time. And I imagine that, as my kids mature, I will need some reserves of happiness to confront what is to come.

These days, I am more evenly in the acceptance phase of my grief. Don't get me wrong -- feelings come up. Feelings of frustration, anger, and especially regret for the time that I spent wallowing, bargaining, and cut-off from help.

But I am learning to front-load the happiness with little treats to myself: setting small goals, coffee dates with supportive friends, inspirational reading, positive talk with my partner, treating myself to a special, but inexpensive purchase. I front-load on happiness by simplifying with a Friday night take-out dinner for hubby and me after the kids go to bed. Another way I front-load happiness is by saying no to volunteer obligations. I front-load on happiness when I let my kids stay in their zone of proximal development, which can mean staying home and playing board games on the weekend, rather than going to a crowded place with lots of other people.

I have no advice or helpful tips. Everyone takes their own path to acceptance, finds their own happiness.

With acceptance comes the power to engage with the world on important issues. I delight in both of my children for being the people they are, and I am finding ways to help them follow their happiness. In the end, I trust that being a model of happiness and good self-care will be a gift that I give them, and that they will learn to take care of themselves in the same way, when the time comes.

Wednesday, October 27, 2010

The "R" Word Revisited

Brian R. King, LCSW

Recent headlines about the epidemic of bullying, unfortunately, point to school systems overall that appear either indifferent to bullying, referring to it in some cases as “a right of passage that children must endure as a means of building character” (one school administrator actually said this in an IEP meeting I attended), or they minimize it as a misunderstanding. Others exercise willful ignorance under the guise that “We didn’t see it”-- as though the bully is supposed to say, “Teacher, looky here! I’m going to treat Johnny like crap now.” Give me a break! If a child bullies another student out of the view of a teacher, it’s still bullying and not an opportunity to evade responsibility because the bully is savvy enough to know when you aren’t looking.

Let me be clear, bullying is not a simple problem of the playground tough guy establishing his dominance while teachers are preoccupied. This problem isn’t caused by school or teachers looking the way.  It’s a larger social problem that we all bear responsibility for creating, allowing, and exacerbating.

The recent surge in bullying news has also opened up a lot of old wounds from my own childhood. That and today’s incident with my son reminded me of an incident when he was younger. An incident which brought me out of my shell in a big way, and opened the door for the self-advocate I have become. I’m revisiting the article I wrote about it back then, because it is still an issue that is out of control.  This needs to stop as fast as a bird slamming into a window (for you bird lovers I was just looking for a concrete metaphor to drive my point home).

It was about five years ago. We lived in another town then. My son came to me and informed me that there was a neighborhood bully who was targeting him. Even worse, the bullying often took place in front of other parents, who didn’t intervene. Once I heard that, my papa bear instincts reared up. It terrified me that I couldn’t look to my neighbors to be role models to their own kids or others when they were so clearly out of line.

I admit that, at the time, my neighbors were not that familiar with me, as I am not a social being, and their tendency to assemble in group was enough to keep me indoors. So, when my son told me what had happened I struggled with how to reach out to them, as I didn’t have a rapport with any of them.

I decided to write a letter that would allow me to organize my thoughts, choose my words carefully and eliminate the possibility of becoming nervous and tongue tied during a face to face interaction. Below in italics is the letter I constructed.
Hi Neighbor,

My name is Brian King. My wife and I live at (address omitted). You may be familiar with our older son, Zachary.

The reason I’m writing this letter is to introduce Zach to you, and help clarify some misunderstandings. Zachary has been diagnosed with a form of Autism called Asperger’s syndrome. This often causes him difficulty when interacting with your children, as first and foremost Autism Spectrum Issues make it difficult for Zachary to socialize in a conventional way.

Zachary is a very sweet and honest boy. Unfortunately, his enthusiasm and self-assuredness can come off as pushy, and sometimes controlling. Zachary can be very talkative and I understand that he can sometimes require a lot of energy to be around.

I apologize for not having made an effort to meet you, but as they say the apple doesn’t fall far from the tree, and my boys inherited their autistic features from me. Thus, I am shy to new people and am anxious around groups of people. Make no mistake, I am eager to get to know you.

Most importantly, I am writing this because I want to extend myself in every way to help support you in supporting your children, and mine, as they try to form friendships in the neighborhood. Zach has a clumsy social style, due to his Autism Spectrum challenges, and your children, no doubt, find him frustrating to deal with, at times.  I don’t expect your children to understand this about him because, how could they.

Unfortunately, a problem has arisen that compelled me to write this letter. One boy on this street has taken to routinely calling Zachary a “retard.” In the special needs community this is the equivalent of calling an African American the “N” word. For a child who knows he is challenged and is trying his best, this word cuts deeper than you can imagine.

Though we may not have met, I would love to meet you and support you as you support my son in his efforts to make friends in the neighborhood.  He will no doubt have challenges his entire life in socializing and being understood. I would hate to see his neighbors turn their backs on him.

I am here to support you, and your child’s efforts, in getting to know Zach. Please, by all means, feel free to let me know when he has pushed one too many of your buttons and I’ll gladly come get him. I’d rather him continue to be welcome at your home than to be a consistent source of aggravation. I am here whenever you need to talk.

Thank you so much,

Brian King
That’s the letter that was hand delivered, by Zach, to the parents of each child he played with. Zach was allowed to read the letter before he delivered it and was comfortable with doing so. I am happy to say that the response to the letter was extremely positive.

The first parent to receive the letter came over immediately and thanked me for it. He had experienced Zach’s intensity first hand and had experienced the frustration addressed in the letter. He told me of the difficulty he had at times knowing how to interact with Zach, and was at a loss over how to address it with parents he’d never met. This letter not only gave him the insight he needed into Zach’s unique behavior, but also in how to approach me. He also offered to more closely monitor the social interactions of the neighborhood kids and to introduce me to the other parents when I was ready.

The second parent to come to the house was the mother of the unnamed bully in the letter. She said she knew upon reading the letter that it was him and that this has been an ongoing issue with him. She explained that he too has social awkwardness, is bullied at school and often resorts to taking it out on others.

She further stated that upon reading the letter she called a family meeting and had her son read the letter to the family and had a discussion about the impact of bullying. After that discussion the boy who’d called Zach “retard” asked if he could come over and apologize to Zach.

In all honesty, I did have reservations about sending out this letter in the first place, as I quietly feared that my neighbors wouldn’t care, because so many stood by while the bullying took place. It would seem that the letter instilled a little self awareness and accountability in the parents without specifically pointing fingers.

If you feel the need to write a similar letter to your neighbors and fear it will result in negative consequences I, unfortunately, cannot promise you that it won’t. I was very fortunate in the response I received. However, I assure you, it is far more damaging to have your child be excluded and bullied because you’ve allowed the neighbors to remain uninformed and ill equipped to interact with your child. Please don’t underestimate your neighbors.

If you want to stop bulling start in your home, your neighborhood and your community. Begin the dialogue and continue the dialogue until bullying stops.

Feel free to share this and leave your comments below.

Monday, October 25, 2010

Don't Yell. Embrace Your "Inner Bitch" Instead.

Elise, A.K.A. aspergers2mom
We have all heard the stories. That mother who just won’t listen when administrators talk about her child, the parent they delegitimize because she got frustrated and yelled at them, the one who thinks she knows her child best. So what do you do if you are faced with a problematic situation? How do you channel your frustrations to get your child the services they need? It wasn’t until I was in my forties that I learned that you need to do what you need to do for your kids -- who cares what others think? This is what I call "embracing your inner bitch."

Now, embracing your inner bitch is a good thing. You use your frustration and your anger to motivate you, but you do so in a way that is calm, intelligent, and very thought-out. You leave the yelling and the kvetching and the breakdowns for home, Facebook, or Twitter (as long as someone from your district isn’t following you on social media). So the question becomes: how do you get what your child needs without throwing a fit?

To start with, come in prepared -- very prepared. Read the law books available from different law sites. I like Wrightslaw. Their books are succinct and to the point. They guide you through the process with wonderful examples. I also like their website, -- it has a lot of information. Go to your state education department, they should have guidelines for special education accommodations. (My state even has a special section on autism.) Check the federal government’s website -- remembering that an IEP is based on the Individual with Disabilities Education Act ( and a 504 plan is based on the Americans with Disabilities Act ( Make sure you are well-versed. Learn the lingo. Learn the difference in the two laws and how they apply to your child.

Next, get your child's medical information in order. Make sure you have a diagnosis letter, plus a letter outlining the supports the doctor recommends. The schools do not have to take the recommendations into consideration, but these letters show that you are serious, and they are good information if you decide to pursue a due process hearing. The school will know you are not coming alone and that you have back-up. (Doesn’t always work, but at least the school is on notice.)

If you had outside testing done in addition to the testing done by the school, bring those results with you too, and confirm that they was sent to the school beforehand, so the school can't say they haven’t seen the test results. If you can work it out, it helps if the doctor or psychologist attends or can be phoned in during the meeting. Even if you are told their participation is not necessary, I would insist strongly. (One more reason why state regulations are very important to understand.)

The next thing to know: what services are available in your school district? Your child is entitled to a free and appropriate public education (FAPE) in the least restrictive environment (LRE) in which they are making academic progress. This does not mean that they are getting A's. Children get promoted to the next grade who get C's as well. If they can function in a mainstream environment with support, e.g., an aide, then they should be mainstreamed. That would be the LRE. However, if your child still cannot learn and still has meltdowns and still cannot function in a mainstream setting, then it might be wise to seek a specialized program for them. Now you must, with a big "must," understand the programs available in your state.

Here in New York, the Education department has to certify any program, and you are obligated to try to keep the child in-state. You have to look in-state first for residential placement as well. Get a list of  appropriate programs and talk to the directors; go see the programs with and without your child. The school is supposed to view the programs as well. There is an application process that the school has to abide by for each school. Make sure that they do: request to be copied on all paperwork, and call the programs to ensure everything is being processed as required. To quote Ronald Reagan, “Trust but verify.”

The last step is to prepare the IEP to fit the program the child is entering. Make sure that the goals are realistic and that there is also some growth allowed, too. Goals should not be too easy. If the child reaches all their goals, they don’t need services anymore, right? You should also demand more than educational goals. Your child needs social and emotional goals as well, and, very very importantly, executive functioning goals. These executive functioning issues can be the bête noir of our children’s existence. If the children don’t learn how to organize, and process for themselves, they will be lost in their lives.

These are just a few steps to remember when preparing for that IEP meeting. And, again: you don’t have to yell. You don’t have to threaten. Instead, learn, organize, and collaborate with those who work with your child. Unfortunately we sometimes may need to go the route of hiring a lawyer, which is not pleasant. Hopefully for you it will not come to that. It didn’t for us, because I followed the guidelines above.

So put aside that notion of being the nice girl, the one everyone has to like, the one who has to please those around her to validate her self-worth. Use your intellect. Use your strength. Use your ability. Use your wisdom. Use your power. Embracing your “inner bitch” is a good thing. And if necessary, make sure they learn what the word “bitch” really means.


A version of this essay was previously published at Raising Asperger's Kids,

Friday, October 22, 2010

Why Every Decision I Make Matters

Lisa Brandolo Johnson

I recently read about researchers who suspect that children with autism have a different chemical fingerprint in their urine than neurotypical children. While the researchers' claims are questionable, a urine test for autism would save me so much emotional anguish. It isn't that I really think my son was misdiagnosed and that he is on the spectrum -- but it would just be a final answer. A yes or no test would be objective, it would remove the human element of error. It would be concrete.

I am a parent of a child who, according to the Autism Diagnosis Observation Scale (ADOS), is classified as non-PDD.  This is good news, right?  This means all of his delays can go away, right? His clinical diagnoses of developmental delays, behavioral disturbance, and anxiety related to sensory issues?

Without a test for autism, I am left wondering what it means for my child to score a five on the ADOS when a score of eight puts him on the autism spectrum. Wondering what it even means to have enough questions about a child that the test is even done in the first place.

At the time of his testing, the ADOS score just told me that he did not have autism. That I just needed to be patient. That I needed to focus on all the gains he had made in the past few months and just chalk up his symptoms to some type of developmental blip. That I just had to accept he had some type of serious reaction to the birth of his baby brother, and to the fact that his Dad who had worked from home now worked outside of the home. That all of these things happened when he turned two.

What this type of ADOS score did not give me: any information about what I could expect for his future. Or any preparation for how hard I would have to work to get him support.

Because you know what an ADOS score of five means? It means the door slammed shut for getting services at school. It means we spent our time, money, and energy on private evaluations by occupational therapists, speech language pathologists, school psychologists, and mediation. It means I lost the battle to compel the school to provide my son with the services he needed. The only option I had left was to get a lawyer and sue my school district. I did not want to do that. By the time the lawsuit ended, it would be close to the time my son could enter the integrated preschool as a typical peer.

I decided to just wait. The waiting was not easy. I can tell you that, at the time, I felt like a freight train was running loose inside my body. I needed to focus on something positive, something other than the fact that my son scored five on the ADOS and if he had scored eight he would have been on th autism spectrum. My husband was a software developer and iPhone enthusiast, so I said "Let's make an app for the iPhone." The iPhone seemed like such a great platform for the visual supports, storyboards, and "maps" that helped Graham so much. We created -- and I focused -- on iCommunicate, the app I thought should exist. An app that could help my son, and children like him. An app that was discreet, that I could always have with me.

As I waited, there were turning points for Graham. His developmental specialist  was the one who started using visuals to support his sessions, and the occupational therapist (OT) recommended I use storyboards to help prepare his for transitions such as leaving the house.  We started drawing stick figures with arrows to explain to him that we were going to the playground or beach or wherever.  The visual supports and storyboards really seemed to help him: when he could see what was going to happen, it lessened his anxiety.

The OT also suggested designating a "safe" spot for him to retreat to, because he had been trying to bolt at every event or social gathering we attended, to get away from the activity. He seemed to appreciate the safe spot, whether it was a tent he could go into alone, or a camp chair placed away from the group. 

Another action that seemed to help significantly was to just cut back, way back, on what I tried to get him to do. At his one year Early Intervention (EI) evaluation I remember breathlessly showing the EI specialist all I had planned for the Fall: Monday we would go to the library, Thursday we had music class, on and on. I just thought I had to keep trying, I just needed to give him more practice. I probably seemed crazed. I hadn't slept much in those nine months, with a brand new baby in the house and a child I seemed to be losing, who had a bald spot on his head from pulling and twirling his hair from what we perceived as stress.

The EI specialist said, "you know, you don't have to do all that, you have been trying for the past nine months, and everybody is really stressed out." Graham's evaluation indicated that his social and emotional progress was tanking and he had made no gains in his receptive language -- he was 32 months old and scored at an 18 month social and emotional level.

When that specialist gave me "permission" to just stop, that is exactly what I did. I pretty much stayed home for three months. I just stopped pushing Graham to do things he did not want to do. If it wasn't a positive social interaction for him, he didn't have to do it.  Of course there were some social events we were obligated to attend, like Thanksgiving, but there we gave him his map, prepared him as best we could, and when he wanted to retreat to the upstairs, I let him.

I accepted him. I followed his lead. And it seemed to work. He went from getting worse and worse, to slowly emerging.

So today, almost two years later, I can check off a lot of boxes:
  • He attends birthday parties successfully - check
  • He did well at an integrated preschool - check
  • He is making friends - check
And then there are a few things I can't completely check off yet:
  • He can have a completely successful outing in a brand new loud environment - can't check it off yet
  • He does well in a new group of kids where an adult isn't directing the activity - I can't check that off yet, either
When the last school year ended, I had to decide what to do for this school year. Should I keep him where he is, in the integrated preschool with four teachers and ten kids, where he has made great gains and his confidence has improved? I struggled a lot with the decision. Why shake his world up? He was making great gains. He even started playing T-Ball in the Spring.  But he did not get much free play time at the integrated preschool. It was a seamless, predictable, teacher-led program. It was just what he needed the year before, but I felt he didn't have enough free play time, which is where he needed more support. I also wanted things to be a little less predictable. He needed to learn to roll with things, just a little.

On the other hand, I was very nervous about putting him in a situation where he wouldn't be successful. And I did not feel the weight of my belief -- that every decision matters -- until I did sign him up for that new preschool. The preschool where there are more kids and fewer teachers.  The preschool where the kids probably never spent a season at home because the outside world and socializing with others was just too much for them. But he did well, he was happy, though I was very nervous.

I still feel that pressure of making all the right choices for him. I still wonder about the choices I made two years ago with the help of professionals. If I didn't start supporting him with visuals and not forcing him to be in situations that were obviously stressful for him, would we be in a different place? I'll never know. Right now, I'm savoring that I took the leap and changed his school and so far, so good.

Why do I need to even ask questions like these?  I have to ask it because I still don't have concrete answers for why my son has an ADOS score of five,  why he's improving, or why he still needs support. I have to ask it because no one can tell me what it really means for his future that he was diagnosed with developmental delays, behavioral disturbance, and anxiety state related to sensory issues.  I have to ask it because I feel like every decision matters, even if I don't know what the results of that decision will be, or how it will affect his development. I have to ask because I have to try, have to ensure that all of those boxes get checked off. 

That is why a urine test for autism sounds so good.  Then I could check that box off, at least.

Wednesday, October 20, 2010

All You Need to Know

Jess at Diary of a Mom

I wonder ~

Do you know that I sneak into your room to watch you sleep, secretly hoping that you might wake up, even for a second?

When you do wake up and I’m not here, do you wonder where I am?

Do you understand why Mama has to go to work, baby?

Do you know that it kills me to leave?

Do you know that my heart breaks every single time I get into the car and drive away?

Do you know that I think of you every moment of every day?

Do you know how desperately I want to restructure your world -- to make it less hostile, less foreign?

Do you know how hard I try to make things easier for you?

Do you know that I would give my right arm to take away your fears?

Do you know that I carry your worries with me? That I flinch when a baby cries even when you’re not in the room? That I wish that somehow that helped?

Do you know that there is nothing, nothing that I wouldn’t do to ensure your safety and happiness?

Do you know that it cuts me to the core when you say, Don’t touch me! even as I burst with pride that you finally have the words to say it?

Do you know how grateful I am for those hit-and-run hugs that come at me with all the force of the universe, even if they end just as abruptly as they start?

Do you know that your laughter has the power to heal?

Do you have any idea how much you’ve changed me?

Or how grateful I am to have been changed?

Do you know how many people are rooting for you? How many people cheer your victories and hold you in their hearts when you stumble?

Do you know that you are smart as a whip?

Do you know that you have autism?

Does that strange word that we use mean anything to you?

Does it help to know that there’s a name for the things that you struggle with? That you are not alone in those struggles?

Do you know that as you grow up there will be an army of people out there with similar experiences?

Will you want to find them?

Will you take comfort in their friendship?

Will you find pride in being different or will you choose to try to blend in?

Or both?

Do you know that as long as you can make that decision for yourself, I will feel as though Daddy and I succeeded?

Do you know that I envy you your complete lack of pretense?

Do you know that you are the most authentic person I’ve ever met?

Do you know that you make the world better, simply by being who you are?

Do you know that you touch hearts and change minds and bring everyone around you to a higher place?

Do you know that I have already learned far more from you than I will ever teach you?

Do you know how proud I am to be your Mama?


I love you, baby – with every fiber of my being.

Don’t worry about the rest of it.

That’s all you need to know.


This essay was previously published at Jess's personal site, A Diary of A Mom.

Tuesday, October 19, 2010

TPGA Status Report: 10/19/10

When Liz, Jen, Emily & I conjured up The Thinking Person's Guide to Autism in June 2010, I thought it would be a straightforward project like The Can I Sit With You? project that Jen & I have been running since 2007, in which we put out a call for submissions with a deadline for inclusion in the book, we publish the essays online, we compile them into a manuscript, commission a cover from wonderful book designer Amy Freels, and send it all to the printers. Then we have ourselves a really useful book within two, possibly three months.

All I can say is, TPGA is a different project entirely, compared to CISWY. It's certainly a bigger project. We are overcome by and so grateful for the incredible response to this project, and the volume of excellent submissions -- which have never stopped coming, not for a moment -- thank you.

But we have closed submissions for the print version of TPGA. Which means we need to get the book out. Which we cannot do if we keep publishing essays on the website every weekday as we have been -- this is an all-volunteer effort, and we need to carve out time if we're going to be able to edit and publish what is certain to be one of the most helpful autism books around.

So, we're moving to publishing on the website on Monday, Wednesday, and Friday only. This may mean, for those of you whose essays have been accepted, they will be published online at a slower rate. But they will be published -- as long as you didn't get a "This does not quite work as written, please consider editing" message from us in response to your submission or latest draft. We look forward to featuring your writing and insights.

For those of you waiting to hear if your essay will be included in the book -- we are going to be making a decision by the first week in November, and will notify you then.

And when will the book be out? We're now looking at Winter 2011. The Thinking Person's Guide to Autism is going to be a great book, but not a small book (the unculled version of the manuscript is over 400 pages long), and we want to do it justice. We really want this to be a book that anyone new to the world of autism can pick up and use to find answers. We really don't think there's anything out there like it. We need to do this right.

Thank you for your patience. TPGA is going to be worth the wait.

Warm regards,


Friday, October 15, 2010

Sensory Seekers and Sensory Avoiders

Hartley Steiner

For the purpose of this post, I am going to list sensory seeking and sensory avoidant behaviors, to paint a more accurate picture of what sensory-based behaviors look like. You can consider these 'symptoms' or a 'checklist' but my real goal in posting them is to help parents and caregivers recognize the sensory challenges in the children in their life.  In addition, I hope to paint a more specific picture of the kinds of behaviors Sensory Seekers exhibit.

Sensory Seekers

I completely ignored the first person who suggested Gabriel had Sensory Processing Disorder (SPD). Technically, I even made fun of her. How stupid was she to suggest my son had sensory issues? My kid wasn’t one of those who covered his ears at every little noise, nope, not my kid. My kid was fine with loud noises, loved water, mud, hot salsa and was not afraid of anything -- OK, besides bees. I had a child who would climb to the tippity top of a play structure -- and stand on top of it. No, my kid was not at all adverse to sensory stimuli – as a matter of fact, he couldn’t get enough. I didn’t understand how that could be a sensory processing problem.

When I finally gave in to our psychologist, an embarassing one year later, and read the book The Out of Sync Child, it became much clearer that my son did indeed have Sensory Processing Disorder and was continually seeking input. I had no idea that SPD included sensory seekers -- I thought that all children with sensory issues were avoiders. I couldn't have been more wrong. But, I think many people still share my initial misconception. It can be easier to understand kids who avoid input -- too much noise, too much touch, too much texture -- than to understand kids who can’t get enough. 

Avoiders tend to get labeled as 'fussy,' 'sensitive,' 'picky,' or 'spoiled;' Seekers are often considered 'behavior problems,' 'hyperactive,' 'difficult,' 'stubborn,' 'coddled.' Many of us parents have been blamed, told our kids need more discipline, or that they are "In need of a good spanking." Here are some things that you might see a sensory seeker doing:
  • Spinning
  • Climbing too high
  • Climbing everything
  • Crashing into things (people, furniture, walls)
  • Mouthing/licking inedible things (furniture, toys, body)
  • Chewing inedible things (clothing)
  • Eating excessively
  • Constantly wrestling with siblings
  • Touching everything
  • Playing with food
  • Eating messily
  • Overstuffing their mouth
  • Eating spicy/hot foods
  • Under-responding to pain (‘shakes it off’ quickly)
  • Dumping out toy bins just to look at everything
  • Engaging in excessive sensory play (mud, water, soap, etc.)
  • Jumping
  • Pushing
  • Running barefoot
  • Chewing on their toothbrush
  • Not sitting still at their desk
  • Falling out of their chair for no apparent reason
  • Seeking loud noises (turns up TV, battery toys against ears, vacuum.)
  • Failing to monitor their own volume (you constantly say, “Stop yelling!”)
  • Smelling everything, even bad smells
This is not a comprehensive list, but it is a starting point.

Sensory Avoiders 

Sensory Avoiders are probably what comes to mind when people think of a child with sensory issues: The child with his hands over his ears. But, there is more to it than that.  These are children can have sensory challenges with even the basics in life: eating, dressing, bathing.   The sensations from day-to-day living can interrupt an Avoider child's functioning, and make it nearly impossible for them to learn or socialize appropriately.  Here are some things you might see an Avoider doing:
  • Picky eater (prefers one texture or basic flavors)
  • Covers ears at noise (hates vacuum, blender, hand dryers)
  • Avoids touch (not a ‘huggy’ or ‘cuddly’ kid)
  • Hates tags/seams in clothing
  • Won’t wear shoes (or prefers only one shoe type)
  • Avoids messy activities (mud, sand)
  • Avoids art activities like painting or playdoh
  • Walks on toes
  • Doesn’t engage in playground activities (climbing, swinging, etc)
  • Hates a wet/dirty diaper/underwear
  • Dislikes having people too close
  • Refuses to take a bath/shower or play in the sprinkler
  • Hates water on their face
  • Hates/Refuse to brush their teeth
  • Complains about smells
  • Complain that normal light is too bright (wantings to wear sunglasses)
  • Over-responsive to pain (everything hurts!)
  • Avoids/refuses stickers/fake tattoos
Although most kids tend to fall primarily on one side or the other, many kids have experiences in both avoiding and seeking. And there are more examples of both Avoider and Seeker behaviors on the Red Flags for SPD checklist ( If your child is not diagnosed with SPD, but has many of these behaviors, please seek a good Occupational Therapist trained in Sensory Integration techniques to consult with your family.

Sensory issues are on a continuum: Some kids avoid nearly all sensory stimuli, and some kids seek excessive amounts of sensory stimuli. And many kids do a combination of both, depending on where their ‘arousal’ level -- is like a constant balancing act to get the input just right. My son Gabriel, is primarily a Seeker, yet often gets ‘over stimulated’ and requires some down time to regroup -- to be ‘calm and organized.’

Gabriel will climb anything, eat anything (with hot sauce added), loves deep pressure input, and can spin and spin forever. But, at the end of a school day, he becomes an Avoider -- he is already exhausted and melts down at the littlest sound from his brothers -- even a normal speaking voice can be a problem. His body just can’t handle more input, and my usually ‘sensory seeking’ kid is yelling at his brothers to “SHUT  UP!” while pressing hands against his ears so hard you would think we were blaring an air horn at him.

The solution for Gabriel is simple: he needs less input to bring himself back to neutral. But the sensory challenges for each child are different, hence the solution for each child is different.  What is constant is the balancing act of trying to control the amount, intensity, and duration of sensory input coming into their body.

This is no easy task for a child (or a parent).

Understanding the significant differences between “Seekers” and “Avoiders” can help not just parents who are trying to raise a child with sensory issues, but all caregivers – teachers, coaches, babysitters and daycare providers. Increased understanding of sensory seeking and avoiding behaviors allows everyone to better understand our kids.

Wednesday, October 13, 2010

Buying Hope

Jennifer Byde Myers

Lotions, potions. A special chair for eating, a special chair for learning at home. Shoe inserts, leg braces, seat cushions with no grip, a lot of grip, seat cushions with little bumps, seat cushions with little bumps and gel inside, and a backrest. Fancy forks with bendable handles, child-sized forks, spoons with holes in the bowl, bowls with grips on the bottom, bowls with the side cut out, and special chopsticks, and sippy cup after sippy cup with any number of parts and combinations to mess up.

Small piano keyboards, and larger piano keyboards, and a keyboard you can walk on, just like in the movie Big. A touch screen monitor, an adapted computer, an adapted tricycle, an expensive German tricycle. Jackets that zip with a nice big tab, pants with an elastic waist that are easy to take off, overalls which are difficult to take off, and hook and loop shoes, always another try for the best hook and loop shoes.

An art easel, another art easel, another art easel, another art easel. A tambourine.

Crayons for the tub, foam letters, magnets in the shape of the alphabet. Vitamin E, vitamin B, fish oil, grape seed oil, gluten-free, flavor-free foods, straps and Velcro bands. A single button talker, a four-button push talker, a talker that lights up, a button that makes the toy move, cars that go when you barely shake them. Books that talk, books with special flaps for little fingers to turn pages with ease.

Honey oil, lavender shampoo, and a wet suit. A car seat, a booster seat, a bigger car seat, a car seat that can only be purchased through Medi-Cal. Fat crayons, triangle crayons, multi-color crayons, finger paints, paint that sticks to your fingers, brushes that attach to a child’s hand. Weighted vests, extra weights, leg weights, and bands that go around his torso to keep him sitting up straight. A laminator and special software. A pool float to keep him above water, and special swim pants to keep everything sanitary, and shoes to wear in the water so he can keep his balance. Small plastic brushes and a folder to document each time we brush, and another folder that is a special color to track everything, and while we’re at it a new computer to better document his life and his doctor’s appointments.

A toothbrush that goes on my finger to brush his teeth, an electric toothbrush, a toothbrush that lights up, a toothbrush with Dora, with Spiderman. Ski hats, headphones, an iPod, tape recorders, a booster seat with headphones already built in. Cup holders that attach to strollers, and wheel chairs, and windows. Cup holders that go into other cup holders for an easier reach, and strappy water bottle carriers that sling over seats and on to wheelchairs. Flashcards, and puzzles and every brightly colored spinning, honking whirly toy we could ever find.

My house is filled with piles of hope.

Some things we bought all on our own, most were purchased because someone else thought we should, or we saw it work for another family. They were birthday presents from grandparents, and things we bought off Craig’s list.

When things are going well, the toys and books and projects around my home are like little pieces of inspiration, a future where Jack’s communication will be unlocked, and he will be able to ask for the four other toys in the bin. On hard days, this jumble of disaster we call home is a minefield of disappointment, the closet barely holding in all of the unsuitable gifts my son has been given over the years, and the house a tripping hazard of wasted money.

When he was younger, when some people thought Jack was just going to “snap out of it”, we often felt desperate, and there was always a steady flow suggestions on what to buy. Jack comes with multiple diagnoses on top of his autism. His cerebral palsy makes us a target for all of those neurologically stimulating things for autism, and all of those special devices that might serve a purpose for improving his balance, coordination and bilateral movement.

This over-buying is not limited to parenting a special needs child; we all want more for our children. Families with typical children go through ballet lessons and move on to soccer before settling comfortably at softball. There are blocks that lay waste when more intricate building materials and model planes arrive. The difference is that they can be finished with those blocks because their child has grown out of them, whereas my child just never did master stacking more than three high, and I bought the next set of toys because I thought perhaps they would be the object of desire for my son.

How many years, how many dollars did we spend before we realized we shouldn’t try, and we couldn’t “fix” Jack. Jack is not sick. Jack is not broken. Jack is whole and beautiful and amazing exactly as he his. And if that sounds like we’ve given up hope, we haven’t. Instead we have given up paying for someone else’s notion of hope. We’re doing our best to stop trying to buy our way out of the constant guilt we feel that we aren’t doing enough for our children.

We’ve given up purchasing every single thing that worked for some other kid with autism. We focus now on what our family needs. Can Jack really use it? Will it improve his quality of life? Can we afford it? Does it align with our family’s value system? Can we buy it locally? Can we borrow it first from someone else, to see if it really works, because most of the time we are left to struggle through purchase after purchase, never knowing whether something will work until it’s paid for and assembled, and not returnable.

It took a few years, but we have crystallized several thoughts, ideas I go over when I am confronted with an opportunity that feels like: if I get it right this time, it will forgive, somehow the thousands of other dollars we’ve wasted.

·      Always borrow the item first if you can. If you can test drive the item, or a very similar item, you can avoid making costly mistakes, and purchase the right size or style the first time.
·      If an OT, a PT, or some other professional suggests you purchase something, make sure that medical insurance, or a state program doesn’t already cover that item before you pay out of pocket. Budget cuts and unfriendly coverage mean that whatever it is might not be covered, but it is well worth it to ask.
·      Think about whether the device will work for your specific child, and you are not purchasing it solely because you saw another family’s success. This has been my number one purchase instigator, and it is always the most depressing thing when the item doesn’t work for my kid.
·      Steer clear of snake oils and false prophets. If the therapy/device/food/supplement says that it treats autism, and several other things ranging from dyslexia to ADHD to sleep apnea, look more carefully, and buy more judiciously to make sure that’s really what your child needs.
·      Use your crafty, MacGyver-like skills to adapt regular items for extraordinary uses rather than pay for the special item from the special catalog. The hardware and fabric stores have many ways to make things useful, less expensively. We have Velcro, duct tape and a variety of bands and clips available at all times in our workshop.
·      Do not let the sorrow, or guilt of other family members influence your purchasing decisions. Grandparents, for example, have the weary task of being our parents, and our child with autism’s grandparent, and they want all of us to be happy. Their need to “fix” things can make everything seem necessary.
·      Use the Internet. Research the item carefully before you buy to get the best price, the best one of its kind, and the exact thing you need. I often type in whatever I’m looking for, and the word “awful”, “terrible”, or “never again” so I can find the specific complaints others may have had. (This trick also works really well for hotels and restaurants.)
·      Build on your successes. Look to see what you already have that didn’t work, or gave you great success and build from there.  Several items we purchased as a “cure all” for our three-year old boy, were disappointments then, and have become hits now as he has gained more skills. 

What I realize, as my son turned ten last week, is that the most important thing I can garner for him, the most valuable thing I can do, is be the best parent I can to him. Encouraging his strengths and helping adapt his world to accommodate his deficits, is mostly done with words, and patience, and affection, and those things don’t cost me a thing.

Tuesday, October 12, 2010

My Child and Me – Keeping Everyone Honest (Or, the Therapists We've Fired)

Jennifer Minnelli, M.S., CCC-SLP

When your child first gets diagnosed with a developmental disorder, you, as a parent, are in a very vulnerable place. Regardless of your area of professional expertise, it's almost as if you start over again, as a beginner. A beginner to parenting, and a beginner to this new world of diagnoses, specialists, medications, teacher opinions, and therapists.

When we started down the road of diagnosis for my quirky oldest child, I was reluctant. It was hard for me to submit to other peoples' opinions, when I felt I knew exactly what was going on with her and how it should be treated.

Also, I felt, I knew the dark under-belly of the world of allied health professions. Several years out in my career, I had already worked in a variety of settings, from public school to inpatient hospital, and everything in between. I had worked for some outpatient facilities that I had to leave, after a few months, in order to uphold my profession's code of ethics. I learned quickly that earning a master's degree in one of the disciplines, like Speech Pathology, and passing the professional exams was only the beginning. A person can spend the rest of their career continuing to grow and learn in one or two areas of expertise, or can be a warm body somewhere, and basically make the same amount of money, and have the same benefits. At times, I observed or came to know about circumstances that either pushed the ethical boundaries, like making the same recommendations for every child, regardless of their needs, or flat-out violated them, like billing for services that never took place. To be fair, I also encountered amazing people who did amazing work, and I pride myself on striving to be one of those clinicians.

Still, when my child was three and the preschool teacher started making noises about a developmental assessment at the local early intervention center, I said no. Reason being, I knew the speech lady who heads up the evaluations, and I knew that she always recommends augmentative communication devices (AAC,, because that's her thing. And while I'm glad that she has an area of expertise, every piece of wood does not need a nail, and every child, especially my hyperlexic, highly verbal three year old, does not need AAC I thought I could do a better job myself, creating good peer-matches for my child and scheduling play dates in which she could practice her social skills while doing physical activities -- like monkey bars and digging in sand -- that gave her body the input it needed to help sustain appropriate social interactions.

But as the years have continued to pass, we have encountered lots of therapists. Some good, and some not-so-good. Here are my reflections on why some people didn't work out very well for my child, and advice on what to look out for. I am using pseudonyms to protect people's pride and privacy.

Never choose a therapist who is learning a new area of expertise, and admits it to you. The therapist you hire should know at least as much as you do, about the population they purport to serve, and needs of your child. When my child was four-and-a-half, I thought it would be good for her to have a play therapist, who also had some training in narrative skill development. I found a therapist, we'll call her Heather, who had been practicing Speech Pathology for years, but was new to the art of Floor Time™ (, and was taking a course in RDI™ She agreed to provide play therapy with an RDI and Floortime approach to my child for a reduced rate, because she was learning to practice something new. 

Heather would come to our house, so I had a pretty good idea about what was going on. She focused the first few sessions on developing the therapeutic relationship by playing simple games like peekaboo and hide-n-seek, and at first I thought this was OK. But then my child, with the repetitive learning style, came to expect that that was what they would always do together, and Heather did not have the skills to extend beyond those games, to activities that would build narrative skills and perspective-taking. Plus, she had the nerve to call me on the phone, and tell me that my child was far more severe on the spectrum than I had thought, and that peekaboo was a necessary part of the developmental continuum for my child. As if I hadn't spent the first two years of my child's life playing peekaboo with her. See ya!

Just because the school system offers you free services, it doesn't mean that they are the right services for your child. When the public schools evaluated my child, they came up with the murky diagnosis of borderline high-functioning Asperger's, with fine motor delays and sensory processing disorder. They could not give her a language or problem-solving test that she could not sail through because of her high language and problem-solving ability. And yet, they wanted her to qualify so that she could get I.E.P. Services if needed, once kindergarten started. The occupational therapist (OT) who evaluated her said that my child would benefit from 30-45 minutes per week of occupational therapy, in a sensory integration (SI) environment. However, the department's lead OT said that the schools could not offer 1:1 therapy because that was not the system's service delivery model. So, my child was funneled into “group,” which was a hodgepodge multi-disciplinary group with several children and therapists that functioned like a mini-preschool. 

We went for a few sessions, until I figured out that there was no sensory integration going on, the therapists did not know what SI is, and there were several children in the group who were modeling behaviors that I did not want my little parrot to start mimicking. And then the therapists complained to me about my child's distracted behavior in an almost-venting fashion. Did they do this because we are colleagues and they thought I could take it?? How could this be an adaptive, therapeutic setting for my child? That was that. We did find a fabulous SI clinic ( and my child still enjoys going there to this day.

We owe it to ourselves and everyone else to make sure that the schools know what to do with no-man's-land children like mine. I am fortunate to be able to pay out of pocket for SI services, but not everyone is able to, and those services should be available and the schools should know how to provide them!

Don't fall for snake-oil treatments. If it seems too good to be true, it probably is. We have done many alternative healing therapies: Reiki, craniosacral, acupressure, special diets, etc., and I would say that the best thing that has come out of them is that my child feels cared for by many loving and interested people. There has been no cure to date, and, at this point, I'm past wanting a cure for my child. 

We went to a wonderful and caring person who is an allied health professional, and is also trained in Craniosacral therapy. It was good for a short stint, but then, I got really fatigued by this person. Even though she loves my child and did a great job, it felt like she needed me to tell her how dramatically improved my child was in all of these areas, so that she could keep feeling good about herself as a therapist and a healer. And I just can't get caught up in helping her maintain her self-deception. 

We have good days, we have bad days. Some days we eat the gluten-filled pizza crust. Some days I forget to give my child the Dr. Bach's Flowers drops and the cod liver oil. I can't get pulled into this trap of thinking that if only I did these certain things, my child will magically be neurotypical. And I don't want to be blamed by a therapist because they could not fix my kid.

Trust your instincts. We tried one session with a speech pathologist. She was good, and qualified in the pediatric population. However, she spent the hour asking my child questions, making her sit down, and directing the session. Then, after it was over, she asked me, “What are your child's play skills like? Or does she even play?” Do you hear something? That's the sound of the door closing. Time for me to go out and play with my child.

I used to be a door mat. I let boyfriends walk all over me in my twenties, before I found my kind and wonderful husband. But now that I have a child on the Autism spectrum, I am a worthy opponent for anyone: teacher, doctor, specialist, school administrator, politician, neurotypical child on the playground. We owe it to our children to expect the best, and to find the best specialists for them. Specialists owe it to everyone else to be honest about their areas of expertise, to ask for more training, or go find it and pay for it themselves. And, finally, to admit when something is not in your area of expertise, and to refer the parent on to another expert. Here are three perfectly acceptable answers to parents:
  • “Yes, I know how to treat children with fine motor delays. I have twelve years experience treating kids in a clinic setting. Here are some references.”
  • “Yes, I have some experience with social thinking deficits and am attending a conference in two weeks to learn more about them. Tell me more about your goals for your child and his areas of need.”
  • “I'm sorry, but the only experience I have with that population dates back to my graduate school years; however, I can refer you to Susie Q., who specializes in children like you are describing.”
Every discipline has a code of ethics. Here's mine, from the American Speech-Language-Hearing Association: Lately, I've been thinking about the Hippocratic Oath, “Do no harm.” I recognize with all of the issues in medicine, that may be the best we can hope for. What could be a good oath for professionals like myself? I am really interested in hearing others' responses to this.

In the end, when you are working in a profession that touches children and families, it's not enough to say that you love children and that you want to work with children. Children and their issues are but 1 part of the equation. When you work with children, you have to know how to talk to the adults that are their parents, you have to acknowledge that there may be a grief process going on, and have some understanding of the family system. You have to speak with other disciplines, and integrate their ideas and opinions. Finally, you have to realize that it's not about you, it's about the children and the families that you are serving.

Monday, October 11, 2010

How to Help Your Autistic Kids Have the Best Halloween Ever

Shannon Des Roches Rosa

When it comes to Halloween and autistic kids, parents need to be clear-headed, creative, and flexible, and prioritize our kids' needs and stamina. So, if you're in the market for Halloweening advice, let me dump some on your head, courtesy of personal experience, friends' adventures, the Internet, and the Twitterverse.
  • Does your child find the entire concept of Halloween overwhelmingly frightening? Then sit down with your child and read as many books about Halloween as you can, talk about what kinds of activities may be available, agree ahead of time which activities your child will participate in and to what degree, and reassure them that they can opt out of anything, any time (and then weave behind-the-scenes spells to ensure that your promise holds).
  • Does your child need encouragement to try new or different things? Trick-or-treating may be just the ticket, given the treats they'll get at every stop. (Trick-or-treating can also be awesome for kids who thrive on scripted activities or routine.)
  • Do you think your child will enjoy trick-or-treating, but are worried it may not be appropriate for them? If they tire or get scared by unpredictable things easily, then plan a limited route close to home, or have another adult trail your crew in a getaway car. If your child has limited mobility or is in a wheelchair, scope out your trick-or-treat route ahead of time so you can note non-accessible houses and avoid them.
  • Does your child have sensory issues that make Halloween a horror show of overwhelming strobing lights, loud noises, and scary, unpredictable decorations? Skip trick-or-treating, and instead plan a sensory-friendly Halloween party. If your house isn't the right spot, rally a group of parents and ask a local church or school to donate party space. A dedicated party also allows parents with children on specific diets—or those who prefer to sidestep sugar bombs—to plan appropriate menus.
  • Do sensory issues also limit Halloween costume choices? Are scratchy seams, tags, and headgear all deal-breakers? Consider pajama-like costumes without headgear, like Superman or Supergirl, or Jedi knights. If your child does martial arts, let them wear their uniform. If they want to go trick-or-treating but don't want to wear a costume, then who cares—let them wear their regular clothes.
  • Is your child disinterested in Halloween? Then don't force them to participate in Halloween traditions unless they want to. Instead, stay home and do something your child will enjoy, and look forward to.
  • Is your child now "too old" for Halloween? No, they aren't, not if they still want to participate. While there are some spaces, like some bouncy house pumpkin patch parks, that won't allow in people over a certain age for safety reasons, activities like trick-or-treating should be fine for those who are polite but firm about their (or their child's) desire to delight in the seasonal fun.
Photo © Shannon Des Roches Rosa
[image: White kid picking up a pumpkin in a patch.]
Our family has many Halloween traditions: we go to our favorite local Pumpkin Patch before Halloween. It's not the fanciest pumpkin environment, nor does it have bouncy houses, inflatable slides, or train rides. What it does have is a huge open field of pumpkins, a old truck for climbing and jumping on, a hay bale pyramid for surmounting, and endless running around opportunities for my son to hang out and groove with other kids in the pack-like manner he prefers.

We also do the same trick-or-treating route with the same group, on a path where all the families know us. (And then I may or may not help myself to any tiny Twix or Milky Way bars.)

Good luck, friends. Have a safe, happy, and fun Halloween, and do send me any leftover candy.


A version of this essay originally appeared at in 2010. It has been updated as of October 30, 2018.

Friday, October 8, 2010

Understanding Autism: Gathering Autism Life Histories

Researchers from Columbia University have asked for our help in reaching out to parents on their project, which has such similar goals to The Thinking Person's Guide to Autism. We hope that parents of children with autism who can participate, will.

Thank you,

-Shannon, Liz, Jen, & Emily, TPGA Editors

Dear Parent,

We are researchers at Columbia University's Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child's autism, seeking professional help and navigating the system of services.

The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child's development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents make different decisions in their quest for obtaining the right diagnosis and care for their child. We are eager to hear about how these factors affected your experience and your child's experience with autism.

We invite you to tell your story by completing a semi-structured survey in which your identity will remain confidential. In fact, this task is less of a survey and more of a conversation between you and us. There are three main sections to this conversation. The first section is set up to learn about you; we ask you a series of short questions. The second section is designed to learn about your child; we ask a series of short questions about his/her age, birth year and place and interaction with other children. The third section provides you with unlimited space to write about your story in recognizing your child's autism. We hope you will decide to talk with us.

We thank you in advance for taking the time to read through this invitation and look forward to getting to know you. Please feel free to contact us via e-mail at with any questions that you may have. Please be assured that we will not share your story with anyone other than authorized members of our research team. No one else will have access to it.

To share your story, please click on the following link talk-to-us to the online survey.


Peter Bearman, Principal Investigator
Cole Professor of the Social Sciences

Thursday, October 7, 2010

Autism, Apps, and Adults

Corina Lynn Becker

There's been quite a bit of news lately about how Apple's iPad can assist Autistic children. The stories I have heard are wonderful and hopeful, on how iPads and iPods could bring about a new era of portable supports, learning, and communicative devices, and independence. It has been pointed out that the portable devices, while not cheap, are inexpensive when compared to other specialized devices -- which are often too bulky to carry around and be applicable to various locations and situations.

With the development of specialized apps, a child, parent, teacher or caregiver can carry a small, slim device filled with programs to communicate, understand how to go places, be prompted on doing tasks, keep organized, learn social skills, filter sensory input, and regain calm from stress. For those with motor control problems, the large screen of the iPad offers more accessibility and opportunities for skill development, while still maintaining the portability and function of the iPod Touch. The added bonus of it being a “cool” item also opens a child up to social interaction and acceptance among peers. 

It is, as many have stated, a miracle, or at least as near of a miracle one can get in terms of assistive technology.

This is all very good; there is just one problem. The stories centers on Autistic children, ignoring the potential that this technology has to impact the lives of Autistic adults as well.

Now, I understand why the Autism community is so focused on children; teach skills early enough in life and a child has a supposed better outcome later in life. However, I think that the Autism community in its devotion has forgotten about the Autistic adults, the present ones who have grown up with and without the diagnosis, supports, and services that are available now; the adults our children will become.

I know of many Autistic adults who benefit from the use of apps, myself included. 

Even before I discovered the iPod Touch and iPads, I’ve known how little devices helped me out.  When I was a child, I used a Walkman on the long rides to my grandparents to ease motion sickness.  As a teen, I realized I could use my Discman to block out unwanted sounds when I studied and provided me with my own “soundtrack” to keep me going.

In 2005, I received my first MP3 player, a 30GB iPod Video, which gradually started to go everywhere with me.  I took it with me on my walk to class, as a way to keep from getting bored as a way to keep up a pace that got me to class on time. I listened to it while sitting in noisy lounges, food courts, and cafeterias to buffer out the wall of potential overload as I reviewed course materials and waited for my next class. I brought it with me to study, as up-beat music kept me engaged and energetic. 

When I returned home from school, my iPod started to come with me during my family’s walks and long trips, to provide some sensory relief so I was able to interact even when strained to the max. As I settled into my new place in the city, I listened to it on the bus, and was able to go grocery shopping, fill out necessary forms, and go pay my rent because I had a musical buffer between me and the overwhelming world of intense sound. By occupying one sense, my other often-beaten senses could tolerate more, and I was able to do more. 

For five years, I named my iPod my Personal Sanity Device and took it everywhere.  Gradually, I began to pray over it that during this next trip, the battery wouldn’t mysteriously die, or the hard drive suddenly shut down.  For five years, it hung on past its warrantee and expected battery life. Until this September.

This September, I looked at my long-lasting friend, and gave a deep sigh as it erased all of its memory on me for the last time. It was time, I decided, to get a new iPod. 

And as it happened, I had a pretty good idea of what would be my next iPod, my new Personal Sanity Device, based on the reviews, news articles and feedback from people online. 

As I’ve said before, the iPad, iPod, and other pocket computers, have great potential for assisting both autistic children and adults. The question is do we need to develop apps specifically for autistic adults, or can apps used by autistic children and non-autistic adults be used? 

In some ways, this is what my blog the Autistic Adult App Project is trying to find out, whether already existing apps are suitable to meet the needs of autistic adults, and how affordable they are for people with a variety of incomes. 

While I think that some existing apps are suitable and have their uses, I strongly suspect that there is a need for adult-specific apps, as adults have different needs than children. This isn’t to say that some apps designed for children can’t be used for adults, but rather that some of the subject material within those apps may not be appropriate for an adult, and may not even cover adult needs.

The way I see it, autistic adults do not need the same amount of social skills training and academic related apps as children. However, for those that require and want to develop more skills or work on specific areas of behaviour, the apps should be suitable to the maturity of the adult and allow them either work with a support worker, or self-direct, as per their desires. 

For the most part though, I see apps not as a teaching tool, but as a supportive device for managing functional skills, organizing, dealing with stress, and as a means of communication. Sensory overload can be managed by a range of different apps, not to mention by an iPod’s original function: playing music. Text-to-speech and PECS-based apps may need some customizing for adult needs, but are capable of providing alternative communication for non-verbal autistics, or even for those moments of stress where verbal skills are temporarily lost. 

Other organizational and productivity apps already exist, but can be used to become more independent in remembering appointments, when to take medications, reminders to bathe, eat, and other daily tasks. As there are versions designed for adults in mind, these may not require as much customization for autistic adults and the main hurdle is learning to use the apps efficiently. 

Such apps may not completely eliminate the need for a support worker, but they open up new possibilities in terms of independence, and could that lessen how much a person needs a support worker. This is, of course, the main point of educating and helping children develop from an early age, so that they can be more independent and lead happy and engaged lives as a part of the community, to the best of their abilities.

It is my firm belief that it is possible to support autistic adults with a wide range of abilities and needs in this manner, and that the autism community should be assisting in the development of apps to be used on a long term basis. As we know, a person does not stop being autistic at adulthood, and often  requires lifelong accommodations and supports. So when we look towards the future of current children, we should also be regarding the futures of current autistic adults, as a part of our community.

Tuesday, October 5, 2010

The Inclusion Dance

Susan Etlinger

It's official: I'm a bitch. By which I mean I've moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now -- inevitably -- relentlessness.

And it is relentless -- for reasons bureaucratic, cultural, personal, possibly gender-determined and sometimes inexplicable.

The day starts with a clamor of children in the big yard. It's an expansive space -- too much for the Kindergartners, much less any child with sensory issues -- and children whiz around, hollering, bumping into each other, a chaotic, moving mass of kidness.

Isaac refuses to set foot in the yard. This full frontal assault first thing in the morning is unbearable. He makes a beeline for the library, and insists we sit and read a book. He falls apart when I tell him it's time to go to the classroom. "Nooooo," he wails, sinking boneless to the floor. "Come on, Isaac," says one of the administrators as she briskly picks her way around him. "You'll be late."

We are on another planet, I think. One where there is no word for "late."

In my most philosophical moments, I realize that it's not their fault. This is a foreign language, and they are struggling to learn even the most basic syntax. If he melts down right after lunch (a hasty affair in the multipurpose room, where the echoes are too much even for me), they ascribe it to stubbornness or poor impulse control. They don't ask about what happened right before. That's not the point for them; his behavior is the point.

And so, like a detective, I try to sift through the scraps of information I glean from time to time to find the answer: What was he doing when he got upset? What was the class doing? Where was he? They think I'm making excuses, but I'm looking for a pattern. Was it noise? Did something upset him?

It's exhausting, for them and for me, but mostly for him. "He's so smart," they'll say. "He knows he'll get a reaction. What do you do to discipline him at home?" "Well," I respond, gathering what is left of my wits, "It depends on the situation. If he's dysregulated, I help him collect himself and vocalize how he feels. If he's just being five, we set limits, give choices, the usual. It's annoying, but developmentally it's actually really great." And I chuckle weakly. But no one is interested in an impromptu lesson on theory of mind.

What they don't realize is that Isaac is starting to become aware of his differences. His father and I know this because we see how hard he works to keep it together throughout the day. By the afternoon he's clinging to regulation like a shipwreck survivor to a fragment of driftwood. They're not seeing that his nerves are fraying. And when he lets go and hurls a book at the wall in frustration, it's back to the question of discipline.

What they should do instead: tell him how proud they are that he kept it together this long, soothe him, help him understand what he needs and a better way to ask for it. I worry, more than ever, that his self-esteem is at stake, that he's learning the worst lesson of all: to internalize his feelings.

And yet there are amazing moments, too: hearing that the other children in the class ask him to help with their spelling, or that he loves his social speech group; seeing him stand up with his class at the Thanksgiving pageant.

Inevitably, my crusade to explicate my son is impossible without a fundamental understanding of how his wiring works, and that is in short supply. It's not just that the autism experts in our district are too understaffed and overstressed, it's that they are starting from square one; they have to make up for years of inertia. It's true, he's a complicated kid, and I don't expect anyone to care as much as his father and I do, but ... he, and the other kids like him, deserve better.

This was my saddest lesson of the year: being nice doesn't help. I hoped it would. I was empathetic, I sent links to articles, I offered to bring in experts. But, as one of our therapists said to us, they just don't know what to do with the bumpy kids. So I became that mom: the one whose calls the administrators dread.

When Isaac was just about to graduate from his amazing inclusion preschool, a panel of parents of some older children came to share their experiences. There was one woman who told a story of how she had put her son, a "high-functioning" boy, into inclusion because she couldn't bear the thought of sending him to a school for kids with special needs. But after a year of struggle, she decided that this decision was more about her self-image than it was about what he needed. It was a disservice to him, she felt, and they changed schools.

That story depressed the hell out of me at the time, but it also felt oddly liberating. What if we were in a place where the natural response to a meltdown was joint compression and heavy work rather than yet another pullout? Or where multiple modes of communicating -- verbally, visually -- were routine? What if we were with our people?

But there is no workable option here, and at the end of the day, he's back in the rest of the world, which is not filled with wiggle chairs and chewies and people who appreciate his quirks. And we have to teach him to live in the world we live in, not the world we wish we lived in. It breaks my heart.

So we include, even though the inclusion experience feels like a kind of noblesse oblige. We wake up, we get dressed, we go to school and we crash the neurotypical party every single day. And it hurts, but we do it anyway, in the hope that, if only by our sheer relentlessness, our sheer bovine refusal to disappear, we'll clear a space for him, and, more importantly, help him clear a space for himself.


The above essay was written during my son’s Kindergarten year. Would it surprise you to learn that first grade, and, so far, second, have been an entirely different experience for us? Isaac has a more appropriate support system, and, as importantly, has matured to a point where some of the earlier sensory challenges have smoothed out somewhat. He still requires continual support, but is thriving and happy -- and very much part of his class.

It’s not perfect -- we still fight the good fight -- but we’ve entered a new phase. We’re no longer in an active war; it’s more of, well, let's call it ongoing diplomatic engagement. We don’t expect this phase to be permanent -- nothing ever is -- but we’re appreciating it while it lasts. 


The Inclusion Dance originally appeared in Parent and Sibling Roundtable: Neurodiversity and Caregiving, Disability Studies Quarterly (Vol. 30, No.1).

Monday, October 4, 2010

Shifting Focus: Eight Facts About Autism the Media Is Not Covering

Holly Robinson Peete

Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for seven years already. 

We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial, and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!

Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.

To that end, below I highlight eight things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:

1. Autism Is Unaffordable

I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour -- many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...

Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees ... even in good times.

Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.

2. Parental Guilt

So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical, and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but ... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...

Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.

3. Puberty Plus Autism Can Be a Volatile Mix

Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.

A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."

The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.

Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.

4. Minority Children are Diagnosed with Autism Years Later Than Other Children

There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
That's why the fact that African American, Asian, and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown, or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I've visited black churches with this message letting them know they can be extremely helpful in this effort. We can't allow the window for "age-appropriate, effective therapy" to close on these kids.

5. Autism Can Be Tough on A Marriage

Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last ten years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).

I want to shamelessly plug my former NFL Quarterback's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that ... a book like this might have offered me that insight earlier on.

Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.

6. Autism's Effect on Siblings

We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma ... the list goes on.

It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.

I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie, Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.

7. Adults Living with Autism

The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.

Here are a few sobering facts:
  • More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
  • There is an 81% unemployment rate among adults with autism (CARD)
  • 78% of families are unfamiliar with agencies that could help them (CARD)
  • At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger, and social isolation.

We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends, and supportive communities. They are valuable citizens!

How glorious would it be to get more media attention on this particular issue.

And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.

8. Autism Advocates Who Actually Have Autism

What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that.

I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.

Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neurotypicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.

My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!

I am also so grateful to HBO for the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.

Bottom line: Their opinions should be heard, valued and included.

So here's to breaking off eight rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!


This essay originally appeared on The Huffington Post.