Wednesday, January 30, 2013

How iPads & Tablets Can Support Autistic Learning & Play

Shannon Des Roches Rosa
www.squidalicious.com

These iPads have been around for almost three years now, which is rather mind-boggling. Even though tablets no longer attract sideshow-level reactions with every mention, they are still wonderful tools for many autistic kids and adults, and exciting new approaches and apps keep emerging. I teach autism and iPads workshops all over the country (including a class at San Jose's Morgan Autism Center on February 9th); the following is a general outline of what I'll discuss, and my current take on iPads and autism.

Tablets: Tools, Not Miracles
  • My initial response to seeing my autistic son kick butt using an iPad was elation, 
because he was instantly able to learn and entertain himself independently.
  • However, tablets are not for everyone. Evaluate tablets and apps before buying.
  • Tablets encourage presuming competence by enabling visual and alternative communication and learning.
  • Competence expressed and recognized increases self-confidence.
Benefits: Accessibility and Convenience
  • No cursor analogy -- direct touch screen
  • Fine motor ease -- stylus/mouse not required (and switch accessories now available)
  • So very portable (but invest in a good case, if fragility is a concern)
  • Can replace backpacks -- and cupboards -- of activities
  • App content is not static, contents updates are often free
Benefits: Learning
  • So much more than an AAC device! (Non-dedicated device status can be an issue, less so with Guided Access)
  • Screen is big enough to be digital parallel to paper or books
  • Keyboard and screen are in same space, don't have to move eyes from screen to keyboard
  • Apps are organized, accessible, predictable framework
  • Apps break learning down into discrete chunks, topic areas
  • Learn without needing to read, including read-aloud books
  • Learn independently or with support (but always supervised)
  • Incidental learning opportunities abound
Benefits: Social and Play
  • iPads are cool, they attract other kids – including siblings
  • Can support social skills, formally and informally
  • Custom story apps allow preparing for transitions, routines, meeting new people – or re-experiencing said scenarios
  • Face-blindness (common in autism): labeling and other photo-content apps can enable associating names and characteristics with people
  • Independent leisure time: Learning activities, games, videos
Best Practices
  • Evaluate thoroughly before buying: Tablets are expensive, apps are expensive
  • Get professional evaluation for AAC apps
    • Different systems work for different users
    • If long-term AAC use is expected, do not want to re-learn communication system
  • Get fully informed before upgrading, e.g., iOS 6 deleted YouTube app
Overuse and Abuse?
  • What about reports like “Autistic Kids Obsess Over Screen Technology”?
    • Autistic adults say “Yes, we’re visual and very focused, why not explore how to harness these traits productively.”
  • Savvy iPad-using autistic kids can be experts, help other kids, mentor them.
  • Makes me laugh, for kids like Leo, for whom independent is good!
  • Valid concern for kids who crave screen time (evaluate screen time-limiting apps like Screen Time).
Autism, iPads, and Apps Resources

•    iPad Apps for Autism spreadsheet – a collaborative effort with an SLP (Jordan Sadler) and an autistic adult (Corina Becker): 
www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.html
•    My iPad Resource page: 
www.squidalicious.com/p/ipads-and-autism.html
•    Autistic Adult App Project: 
autisticapp.blogspot.com
•    Eric Saliers, Speech Language Pathologist: ericsailers.com
•    GeekSLP TVwww.youtube.com/user/GeekSlp?feature=watch
•    IEAR: I Educational Apps Review: www.iear.org 
•    Moms With Apps: 
momswithapps.com
•    Jordan Sadler, SLP: www.jordansadler.net
•    Smart Apps for Kids: www.smartappsforkids.com
•    Surprisingly Educational Apps: 
list.ly/list/1Ge-surprisingly-educational-apps?feature=mylist
•    Tech in Special Ed: 
techinspecialed.com

Monday, January 28, 2013

When Autism and Schizoaffective Converge

Cissi Tsang
www.samarobryn.com

There have been various studies and speculation abounding regarding the relationship between the autism spectrum and the schizophrenia spectrum. That is not surprising because there are some similarities in behaviours between the two. Both conditions feature such things as social withdrawal, difficulty with empathy and difficulty with reading verbal and non-verbal cues.

What happens if both conditions collide and exist together within a person?

This is an area that is not often explored. It is almost as if the population of people who have both an autism spectrum diagnosis and a schizophrenia spectrum diagnosis do not exist in the minds of most people. However -- such people do exist.

I am one of them. I have Asperger's syndrome, as well as Schizoaffective Disorder.

How can it be, though? I must note that the DSM-IV-TR does note this possibility. Although rare, it does happen.

With this article, I hope to raise greater awareness of people who have both conditions. We do exist and we do have a voice as well.

My story

I knew from a young age that I was different to my peers. I had obsessive interests that my peers did not share, such as Australian horseracing. I would religiously follow the form guides in the newspaper, and I could rattle off the layout of all the metropolitan racetracks around the country, as well as some country ones. I knew when each major race was held, where and their distances and I would spend my spare time reading about the history of horseracing.

I also enjoyed such pursuits as sorting out coins, lining up my toys in neat lines, and I had such a deep and abiding love for a certain actor that I would spend hours watching and practicing his various mannerisms.

To say I was socially awkward would be correct. I didn't understand nonverbal communication and would constantly misread people. I didn't understand how to hold conversations. I didn't understand people, and people didn't understand me. As a result, I was teased and ostracised - which apparently is an unfortunate experience shared by many on the autism spectrum. I tried to make friends, but most of my attempts would end in disappointment.

When I was a teenager, my experiences began to change. Not only was I socially awkward, but I began to develop strange beliefs. One of them involved believing that my mind was like a human radio, broadcasting all my thoughts and secrets to everyone in my vicinity against my will. Whenever this happened, I would see my mind as a sieve, with me endlessly trying to "plug" the "holes" in my mind while my thoughts and secrets leaked away.

I also experienced these voices within my head that felt alien to me, and were beyond my control. They felt like other entities who were living in my head and sometimes they would converse with each other and comment on my actions. I alternated between thinking of them as God conversing with me, as malevolent spirits in my head or as "internal monologue."

As I hit my 20s and began university, I began to experience deep bouts of depression. I had experienced depression as a teenager, but these depressions were deeper and more pervasive. I began to develop suicidal ideation. My depression also made me apathetic and drained of energy, so I would spend great amounts of time in bed. There were periods where I fell behind on my work, and I suffered the indignity of facing exclusion from the university due to poor grades.

These periods were broken by times when I felt fantastic. During these periods, I was more sociable, and I would talk in a rapid-fire manner. I would sleep perhaps three or four hours a night, but I didn't feel the lack of sleep. I was confident, and my mind had many thoughts all fighting for supremacy. Most importantly, I felt very happy. I was highly productive and I felt I was able to accomplish anything.

For most of my 20s, I alternated between those two areas. Eventually, I went to see a doctor, who referred me onto a psychologist who thought I was bipolar. Then I went to a psychiatrist who confirmed the diagnosis of bipolar.

The strange beliefs, however, still remained. There were times when the beliefs would coincide with a mood episode. They would usually occur when I was depressed. The concept that my thoughts were being broadcasted was one reoccurring theme. There was another reoccurring theme where I believed malevolent spirits were monitoring me.

I began to see a new psychiatrist and found myself developing more bizarre ideas. One time I developed the belief that there were hidden messages written specifically for me in print articles. Another time I believed my psychiatrist was secretly attempting to kill me with medication, so I stopped taking them. My diagnosis changed from bipolar to schizoaffective disorder-bipolar type, which is when a person has symptoms of both schizophrenia and a mood disorder at the same time.

Eventually I stabilised. Meanwhile, my autistic behaviours remained. I had moved onto new obsessions by now, and one of my obsessions at the time was (and still is) guitars. I was able to talk at length about guitar models and guitar makers and would spend long periods reading about guitars. My psychologist began to advocate that I had Asperger's syndrome, but my psychiatrist seemed unwilling to accept that premise. According to my psychologist, I exhibited all the signs of Asperger's syndrome: I had obsessive beliefs, I had issues with social communication, and I had impaired empathy. While I cared about people, I saw people from an intellectual standpoint, and therefore people were more "objects that spoke to me" rather than "a person with emotions." Emotions were not something I understood very well.

One of the difficulties in getting a clear picture is the similarity of some of the behaviours and thought between autism and schizophrenia. My psychiatrist believed that all my difficulties could be explained by the schizoaffective label. He wasn't entirely convinced that my autistic behaviour was a separate phenomenon to the schizoaffective, while my psychologist thought otherwise.

This continued for two years until my schizoaffective had remitted to the point where it became clear my autistic behaviour was not being caused by it, and I received the diagnosis of Asperger's syndrome. I was glad when I heard, because it put two years of limbo to an end. I had spent two years being confused by what I was hearing and I was glad to have finally received a straight answer.

I also felt that the Asperger's diagnosis was correct. During the two years of limbo, I had spent time researching Asperger's and realised I could relate to the literature. I also knew that some of my behaviour, such as social withdrawal, was not caused by a lack of motivation. Instead, it was caused by repeated rejections from my peers. I had wanted friends, which is different than the mechanism for the schizophrenia spectrum where there is a disinterest in having and maintaining friendships due to a general apathy towards life itself.

How does it feel like to live with both Asperger's syndrome and schizoaffective? It can be challenging in some ways, although for the most part I'm lucky that my schizoaffective manifests itself largely as "positive" symptoms. That is, I have delusions and hallucinations, but none of the "negative" symptoms such as lack of motivation or blunted affect. In a nutshell, I experience both conditions separately. My Asperger's affects me in my every day life, while my schizoaffective will rear its ugly head now and again like some monster from the deep.

There are times when both conditions seem to affect each other. Sometimes I will become depressed due to an issue caused by my Asperger's -- for instance, being told I had been socially inappropriate and had hurt someone's feelings. Then the depression will deepen and the psychosis begins, with me going from believing I was a bad person for hurting someone to being an object of God's wrath who deserved to die. While the logic can seem far-fetched, the rigidity of thinking that sometimes accompanies my Asperger's means that I find it hard to think of alternatives when my thinking becomes dark.

In a way, I'm glad to have received both diagnoses because it makes my world make more sense. I finally had an answer as to why I found social interactions so difficult, and I also found the answer regarding my moods and thinking. Also, I discovered that having both conditions didn't necessarily mean my life was over. Looking back, I managed to obtain a degree while I was undiagnosed and unmedicated, despite the challenges of both conditions. I think it's important to note that while conditions can circumscribe your life, they don't prescribe it.

Friday, January 25, 2013

Have You Seen Flummox and Friends Yet?

Shannon Des Roches Rosa
www.squidalicious.com

Have you seen the pilot episode of Flummox and Friends yet? Or -- back up -- did you hear that Christa Dahlstrom created a show just for quirky kids and the people who love (and/or identify with) them? Here's how Christa described the show in a recent BlogHer interview:
"Flummox and Friends is a live-action comedy for quirky kids about navigating the social and emotional world. We've just released a pilot episode that anyone can watch for free online. The main characters are a trio of inventors and their next door neighbors. We think of it as The Big Bang Theory meets Pee Wee's Playhouse. 
"The show is targeted at kids aged 6-11, especially those who struggle with the unspoken rules of social interaction. We see it as a show that parents and kids can enjoy watching together and that education professionals can use support their existing social skills curriculum.
"Most people are familiar with the 1 in 88 number (autism prevalence in children in the US) and we see the show as for the "3 or 4 or 5 in 88." What I mean by this is that there are lots of kids who struggle -- to greater or lesser extent -- with social and emotional stuff but who don't have a clinical diagnosis, who aren't necessarily part of the special education system and therefore don't have access to those supports. We hope that we've created a show that's accessible to a wide audience that reaches beyond the identified special needs community."

Does the pilot episode succeed in reaching its stated goals? Yes and no. Do I think the series can fully succeed, with tweaks and bumps and revisions? Yes, yes I do.

What I liked about the pilot

Flummox and FriendsCelebrating quirkiness. Professor Flummox and his team of inventors are smart, enthusiastic people who like liking things. Yay for liking liking things -- and for creating three very different, distinct quirky characters, all of whom I liked immediately. I also appreciated that the inventors were the majority, rather than the more typical scenario of a single inventor-type character (e.g., Data or Spock from Star Trek) surrounded by, and spending a disproportionate amount of time trying to understand, non-inventors.

Respect. I liked that Dex, the adventurer, had a greeting routine established with every one of the inventors. He was coming into their space, after all. (Person-specific greeting routines are something my own autistic son finds reassuring.) I considered that a gesture of respect and friendship, done on the inventors' terms.

Quirky social perspectives. I really appreciated the two animated sequences that talked about coping mechanisms for socializing and dealing with typically sticky social situations like parties -- from the perspective of people who find socializing not just awkward but anxiety-provoking. When the characters from Matt Friedman's Dude I'm an Aspie said that it was okay to choose not go to a party, or to leave if the party was overwhelming -- this chronic party-bolter practically did a fist-pump.

Modeling self-respect. In the second animated sequence, one of the kids said it was important to "...have faith, trust, and friendship in yourself." Yes. It is. Thank you.

Humor. Down to the last detail, e.g., the door chime featuring the mis-played version of Those Endearing Young Charms from the classic Bugs Bunny cartoon Ballot Box Bunny.

Variety. The interspersing of live action, animated sequences, and music videos from Morgan Taylor (of Gustafer Yellowgold) kept me entertained, and my attention span is similar to that of a 6 - 11 year old.

Areas for Improvement

Social accommodation can go both ways. Unfortunately the inventor trio ... spent a disproportionate amount of time trying to understand and accommodate the non-inventors. I'd like to see a more balanced approach in which the two types learn to accommodate each other -- for instance pointing out that Suzie Swizzler could had used an "I statement" (do educators still teach those?) instead of having a snit when the inventors didn't "get" her party.

Practical advice. I'd also like to see more of the practical exchanges like Professor Flummox's admonition to inventor Wanda not to speak with her mouth open because food particles could contaminate petri dishes etc. That was awesome, funny, and didn't make Wanda feel judged. And in many cases, making the socially appropriate choice will achieve better results, not just make other people feel better. I think it's OK to model this.

Choice in social participation. I'd like the characters to be asked if they'd like to learn how to behave in a certain scenario, and let them sometimes say no, and talk through their feelings about why they don't want to (in the spirit of the Dude, I'm an Aspie sequence). The "in the group" musical sequence was funny and illustrative -- but always mandated being in the group, even when Milo balked. Kids don't always want to be in the group, and need support in learning to articulate why, evaluating when it's appropriate and when it's not, and speaking out for their right to refuse.

Confidence. I'd like to at least one of the inventors be confident in their approach to social interactions, in the model of Alphas' Gary (diagnosed autistic) and Community's Abed (undiagnosed). I do not watch Big Bang Theory but Sheldon appears to be this way as well. This has again to do with taking a practical approach to learning about social skills -- shift the focus from the character realizing (or being told) what they're doing wrong to the character finding out how to take a more effective approach, perhaps through the observation skills that were emphasized in the pilot.

Eye contact. Many autistic people find eye contact difficult, and prefer not to make it as doing so compromises their ability to function in other areas. (A common saying is "I can look at you or I can talk to you, but not both.") This would be a helpful message for Flummox and Friends to spread beyond the autism community.

Captioning. One friend of mine found the dialogue hard to follow. Given that auditory processing can be challenging for autistics, it would be lovely if the entire episode was captioned, not just the Everybody in the Pond video.

More Autistic Participation I'd like to see Autistics consulting more heavily on the live action scripting. There are just some things -- intuition, experiences, trigger words -- that professionals and parents can't provide when it comes to what works for quirky kids, and what doesn't.

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I have faith in Flummox and Friends. I believe in Flummox and Friends. Its pilot is not perfect, but that's to be expected -- did you ever see the original, unaired pilot for Buffy the Vampire Slayer? It has The Wrong Willow. But they fixed it, they reworked it, they made it right. My two other favorite series Star Trek: The Next Generation and Star Trek: Deep Space Nine also took a while to find their strides. Many of the elements that made all three series not just fabulous but classics were present from the get-go, but others needed fine-tuning, and still other elements needed to be massaged into shape or stripped out.

I want to see Flummox and Friends become the fabulous classic our community has been wanting and needing and waiting for.

Have you see Flummox and Friends? What did you think? What can the team do to make it the best show it can be? 

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Disclosure: I was a contributor to the 2011 Flummox and Friends Kickstarter campaign.

Wednesday, January 23, 2013

Can People Really Grow Out of Autism?

Emily Willingham
www.emilywillinghamphd.com
www.forbes.com/sites/emilywillingham

Let’s start with the headlines blaring the news about a recent autism study. They almost invariably use the phrase “grow out of autism,” even though the study itself does not use that phrase or even reference “grow” except to talk about head circumference. Instead, the authors of the report, published in The Journal of Child Psychology and Psychiatry, use the term “optimal outcomes” to describe what they detected in a group of 34 people who were diagnosed as autistic when they were under age 5.

As the study authors themselves state, this idea that autistic people might show reduced deficits to the point of losing a diagnosis is not new. In fact, first author Deborah Fein and colleagues cite studies identifying frequencies of “optimal outcomes” as high as 37% among autistic people. The lingering open questions relate to whether or not the autistic people in these studies had received the correct diagnosis in the first place. The only “novelty” of these latest results appears to be confirmation that indeed, the 34 people they identified as having an “optimal outcome” did receive an accurate diagnosis of autism in childhood. In other words, they are confirmed to have had a developmental disorder, a neurobiological condition called autism — yet, they “grew out of it.”

The rest? Nothing new. The people who show these optimal outcomes tend to have started out with, as the authors describe it, “higher cognitive functioning and somewhat milder initial symptoms.” Many of them had behavioral interventions in childhood. The researchers point out that the perception that everything’s all hunky-dory for the 34 people they evaluated does not rule out their having “residual difficulties” with various aspects of autism, including executive function–think project management–or language or social interaction.

For each participant, whose ages ranged from 8 to almost 22 years, the researchers interviewed the parents. One of the required parental answers for a participant to be considered for the optimal outcome category? The parent had to report that their child/adult child “had typically developing friends.” That question seems to imply a certain low expectation for autistic people, many of whom I know have “typically developing friends” despite themselves still being autistic. It certainly suggests that for people who continue to meet the criteria for an autism diagnosis, any pursuit of a friend of the “typical” sort would be futile.

How did those 34 “optimal outcome” participants do on the various measures of “are you autistic or not”? Well, seven of them–that’s >20% of the group–turned out to have “some impairment” in nonverbal social interaction. For reasons that are unclear, the researchers decided that these impairments were not the result of “an autistic quality” but of “inhibition, anxiety, depression, inattention and impulsivity, embarrassment, or hostility.” Of course, each of those themselves could be secondary to autism. Even though this 20% showed impairment, they were retained as being “optimal outcome” folk, those who, as the news media report might say, “grew out of” autism.

To determine whether or not these autistic people were still autistic, the research team administered a battery of tests; they list eight in their paper. Of these eight, three were parent completed. One consisted of clinician observation and scoring. One was an IQ test. One was a handedeness test (left-handedness is more common among autistic people), and the remaining two evaluated facial recognition and language. ETA: None of them examined if the participants retained any of the positive aspects of being autistic–refined sensory detection, detail orientation, pattern finding, etc.

Let’s go back to those news media stories. In one interview, lead author Fein commented that “these people did not just grow out of their autism.” She then goes on to credit the hard work of the parents and therapists of “these people” for any improvements, but I’d suggest that “these people” also did a lot of hard work–and probably still are doing so. The thing is, no one seems to have asked “these people” about that.

Among the many articles covering this study, I couldn’t find a single one featuring an autistic person commenting about the report. As you can see from how the researchers evaluated their 34 “optimal outcomers,” they don’t appear to have asked said optimals about how their internal function jibes with the external results or what they do to achieve those results. Because no one else seems to have bothered to ask autistic people these questions, I did. I polled the autistic community via social media, asking autistic adults what’s going on inside them when they appear outwardly typical and asking any readers if they felt they’d “grown out of” autism.

Their response was immediate and intense. “I don’t ‘look’ like I have it, but I do,” responded one autistic woman, who went on to describe how she’s learned over time about different expectations for behavior and tried to apply those. Others describe using pattern recognition to navigate socially, while still others report having an “optimal outcome”-like period in later childhood but then experiencing a trough of struggles in early adulthood as new responsibilities and expectations arose. They wrote to me about self-monitoring, about working hard to compensate in social situations but then experiencing crashing exhaustion afterward. They talked about self-selecting their social groups as adults as a way of feeling more socially at ease. The concepts that came up again and again and again were “compensating” and “coping.”

It’s not a huge surprise that autistic people with average or above-average cognitive abilities might be able to intellectualize social rules and algorithms and put them convincingly into practice. Does that ability mean that they aren’t really autistic? The real crux to answering that is this: Do we view autism only as a clinical diagnosis based solely on behavior and outward function, or do we talk about it as a neurobiological construct and identification, with an understanding of the context of the hidden disability and the hard work that those outward behaviors require?

Many conditions that we measure either directly with lab tests or behaviorally can lie under a mask of apparent normalcy or typicality. A woman with diabetes who maintains her blood sugar at a healthy level through diet and medication still has diabetes. A person with obsessive-compulsive disorder who fights successfully every second of every day against caving to obsession or compulsion still has the disorder. Anyone who has ever put on a public face when all they wanted to do was stay in bed should understand something about doing the internal hard work of compensating for a disability without showing outward manifestations of it.

Does that capacity mean, in the parlance of the news media reports or an editorial accompanying the paper, that the up to 25% of autistic people who can do this are “recovered” and no longer autistic? Or does it mean, rather, that they’ve become increasingly adept at meeting the interaction standards of the social majority?

A version of this post was published at 
www.forbes.com/sites/emilywillingham.

Monday, January 21, 2013

Why Did Amy S.F. Lutz Attack the Neurodiversity Movement?

Shannon Des Roches Rosa
www.Squidalicious.com

Autism parent Amy Lutz did her damnedest to verbally maul the Neurodiversity movement last week, at Slate.com. I'm still trying to understand her rationale, because why would she publicly attack disabled people for the crime of appearing less disabled than her own child? Especially the very advocates who are fighting to ensure a better future for all autistic people -- including her son?

I'm used to seeing questionable writing at The Huffington Post, but was surprised to see Lutz's baldly biased reporting in the Slate.com Medical Examiner section. She only cited sources -- outraged parents like herself, mostly -- who also believe "...that those who argue the Neurodiversity position do so out of ignorance." A statement which is not merely offensive but untrue: those who support Neurodiversity tend do so because Neurodiversity is their reality, and the neurodiverse their community.

Autistic adults are not the only Neurodiversity supporters in the autism communities -- there are ever so many parents whose children share Lutz's son's "trifecta of autism, intellectual disability, and dangerous behaviors" yet support the Neurodiversity movement. I'm one such parent, and I'm not shy about speaking my mind. Others, like Kristina Chew, are also not hard to find. If one actually looks. If one is writing an article, rather than a tract.

Lutz feels the Neurodiversity movement is dangerous because it wants to hoodwink the public into falling for "a sanitized version of low-functioning autism." Which is disingenuous, as it is the autism parent communities (not to mention the public and the media) which crave stories of non-speaking autistics like Carly Fleischmann having communication breakthroughs, not Neurodiversity proponents.

Neurodiversity advocates, by contrast, understand that functioning can be fluid and unpredictable not just from autistic person to autistic person but over time and by situation. They understand that a person might be able to pass for "normal" or "neurotypical" yet still experience episodes of bolting, self-injurious behavior, lost speech, or meltdowns. But because, once again, such voices don't support Lutz's argument, they were ignored.

What Neurodiversity advocates do want is for Autistics to be the primary voices for autism rights. Which makes sense to me, when I hear self-advocates like Ari Ne'eman argue for presumed competence and better services for Autistics of all abilities, as he did at the 2011 Syracuse University Neurodiversity Conference:
"At the end of the day, [the self-advocate and the parent community] want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them. "
By pandering to parents who see autism self-advocates as enemies with little concern for autistic kids' "real" needs, Lutz perpetuates a false and needlessly bitter gap between groups who should be working together on a  common goal: better supports for autistic people of all ages. (Autistic children will spend most of their lives as adults, after all.)

Still, I am not sure who Lutz is talking about or trying to lambaste when she writes:
"What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed."
Because her "real autism rights movement" is a description -- though backhanded --  of the Neurodiversity movement. Which has already presumed that "true neurodiversity" as its cornerstone, and moved on.

Lutz's "real autism rights movement" sums up the attitude of every self-advocate I've ever met or corresponded with from the Autistic Self-Advocacy Network, the Autism Women's Network, or the various individuals who have let us publish their writing here at Thinking Person's Guide to Autism (where our editorial staff includes self-advocates as well as parents whose children personify the diversity of the autism spectrum).

I ask you: Guess who is fighting tooth and nail for Lutz's autistic son's rights, accommodations, and respect not just as a human being but as a disabled person? The Neurodiversity movement. Guess who is arguing for "real" neurodiversity yet demanding a focus on a specific segment of the autism spectrum? Lutz.

Lutz is not wrong to be terrified about her son's future. Her Jonah sounds very much like my own Leo, and I share her concern over the lack of decent programs for autistic children and adults who need full time, 1:1 support. But by railing against the Neurodiversity movement, Lutz is stigmatizing and alienating the only people who care as much about her son's future as she does, and who will keep on fighting for him even when she's gone.

I'm not sure what it would take to get Lutz to change her mind and retract her article, or apologize to the Neurodiversity advocates she has mischaracterized so badly. (I certainly hope Slate.com runs a counterpoint.) If Lutz stays her course, then I hope one day her son achieves the ability to read her article, and tell her -- verbally, through AAC, or through Facilitated Communication -- that she blew it, colossally, and why. And if he never is able to read or communicate such things? The Neurodiversity movement will continue to have his back. Whether his mother is able to realize that, or not.

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Please see the ThAutcast for additional criticism of Lutz's article, e.g., her character assassination of self-advocate Amanda Baggs.

Friday, January 18, 2013

Autism and the Quest for Knowledge

Jennifer Byde Myers
jennyalice.com 


Jack doesn’t fit the mold. Not the mold for a typical kid, not the one for cerebral palsy, not autism, not ADHD. Whenever we try to "box him up", another piece of him pops out, unexplainable by a typical convention. I like it that way. I know I didn’t fit into the parameters that were set up for me as a kid, and I do my best to keep growing and changing so I can steer clear of the typical; “what I am supposed to do.”

The problem with being outside of the norms is that other people don’t always know how to handle you, or help you, or befriend you, or teach you, or be your doctor, or your therapist. People sometimes become exasperated, or assume less of you, or ignore you.

And some of that might happen out in the big bad world, but my son isn’t having that experience at school, not ever. No one is ignoring him, or wiping their hands of 'the situation.' We are so lucky because we have a group of professionals that really does 'get my kid'. Sitting in his IEP listening to one educator talk to a therapist about Jack, it was clear to me that they really understand that Jack is an individual, not just a kid with a label, or a few labels. They focus on his education, but realize that the school is not a silo, nor is it a place you stay forever, and his learning reflects the bigger picture of his life. They are constantly looking for ways to motivate him, engage him, and teach him.

I love that the expectation is that he has an opinion, wants to learn, and we just haven’t figured out all the best ways to help him communicate. It is comforting to know that they meet him where he is, but demand much of him. And it is a relief to have my suggestions interwoven into his educational plan so that we are creating goals for Jack that will move him forward at home and at school.

No one is cutting and pasting goals from another kid’s IEP to fill in the blanks for Jack’s 60+ page plan. We have all agreed that Jack is not going to perform the same task (finding his name out of a group of words) ten times in a row just to prove to you he can do it. He might do it twice, and one extra time for a new aide, but after that we know he’s not going to play your boring game. So we’re trying some new things this year. My favorite new thing is that I’m making a list of facts that Jack should know about our family, our life, and our community. The teachers will have this information, and using icons, pictures or words, will be able to ask questions that Jack should be able to answer. Then once we can all agree on his ability to comprehend, and show his level of knowledge there, with known facts, well, maybe we can move on to teaching him information, then quizzing him on that information: Are there sharks in the San Francisco Bay? What is at the Earth’s core? He loves science shows at home, so we are going to build on that. I imagine that the topics alone will be motivators for Jack to want to participate.

As different as Jack is from how I was at the same age, he is still my kid, and he’s my husband’s kid; he’s our genetics, and my husband and I have always wanted to know the answer… to everything. So with that in mind, I want to make sure that we are giving Jack every opportunity to see different places and hear about different topics. We need to help him learn about things he is interested in, and provide him access to information that he just can’t get to by himself. And we need to serve him that information in whatever format works best for his ability to input. Just because we all agree on that IEP doesn't mean the work is done. Until Jack is able to more directly determine what things he studies, there is a burden on us to show him as many subjects, as we can until we hit on "the thing" he wants to know all about.  It's tough to ask for more information on a subject you don't even know exists.

So I am thankful I am not flying solo on this endeavor to help Jack gain knowledge, and that we ultimately have a team of people who are looking for every way to feed that brain of his.

A version of this essay was previously published on goDandelion.com.

Wednesday, January 16, 2013

Popplet: An App for Social Cognition

Jordan Sadler MS, CCC/SLP
www.jordansadler.net

Editors' note: Jordan is a pediatric SLP, so kids are the focus of her post. However we think the Popplet app and strategies Jordan describes so well could work for all ages.

I want to share my review of a fantastic app that I've been successfully experimenting with in my social cognition work with kids. Popplet was designed to create visual maps, presentations, and brainstorms across environments such as work and school. It would make a great visual mapping tool for kids who are gathering information for a class research project, for example. I recommend you take a look at the examples provided by the developer, because the sky is the limit as far as ways to use this app.

So far, I have used the Popplet app in a couple of really fun ways. First, I found it to be a simple means to create a way to store information about other people that we can open up and refer to when we want to make conversation with them on topics they are interested in. For many kids with social language challenges, this is an effective strategy.

In a recent social group, four school aged boys were having difficulty finding common ground in their interests as they were negotiating what to play. My colleague and I were hearing seemingly endless discussion that sounded like this: "Let's be Angry Birds!" "No! I want to do Superheroes!" "No...I'm not really into Superheroes..." "Well I don't even know what Angry Birds IS!" "I don't watch TV at all but I play games on my computer..." I realized that they needed to find common ground, and so I pulled up Popplet on my iPad and we sat together and had a very effective and focused conversation about what each of them likes. Using the lines connecting pictures, I was able to show them visually where their mutual interests or connections were. In the actual Popplet we used, I included a photo of each boy but for the sake of privacy I have taken out their photos and titled them "Boy 1" and so on. We discovered that Phineas and Ferb was the one thing they all seemed to share as a common interest, and so I outlined that picture in a different color border and made it slightly larger to highlight it for them. We were able to print the Popplet and also email it home for the boys to think about during the week; it's a great visual to pull out in group now when they are struggling to figure out what kind of games they want to play.


This week I came up with another fun use. My OT colleague and I were running a social group with three preschool aged girls who wanted to draw. They began to ask us to draw different faces for them, showing various emotions, and because we are therapists who focus on social emotional learning, we spent time talking about how all the parts of our faces change as our feelings change. It can be helpfu for children to learn to interpret facial expressions as a window into someone's emotional state and to learn to show others how they feel by changing their own faces.  Therefore we talked about things such as, "If this is an angry face, it will have an angry mouth and even angry eyebrows!" They were fascinated with this. We then decided to let them see these expressions on their own faces. Each girl had a wonderful time recording a range of her own early emotional expressions using the camera on my iPad Mini (perfect for small hands!). With the camera lens reversed, the girls could keep adjusting their expressions as if they were looking into the mirror until it matched the feeling they wanted to portray, and then we'd take the picture. We flipped through the pictures and had the rest of the group guess each of our emotions based on a study of the expressions. This was fun for all of us, and we observed an immediate improvement in social cognition when one girl cried about leaving and one four-year old peer said, "She's sad...I see her sad mouth and her sad eyebrows."

I opened up the Popplet app and very quickly made each girl a Popplet such as my example below. I emailed them to their parents to look at and play with at home for generalization.


Popplet is very simple to learn and use quickly, making it a terrific app to use when working with children. The user can print the Popplet and save it to the camera roll of an iPad or iPhone as a .jpeg. It is also easy to email as a PDF or a .jpeg. You can try it out for free by downloading Popplet Lite from the App Store, but the lite version only allows you to make a single Popplet. I bought the $4.99 version within about ten minutes.

I'd love to hear how you use Popplet!



A version of this post was published at www.JordanSadler.net.

Monday, January 14, 2013

When Strangers Don't Care About Understanding Autism

Shannon Des Roches Rosa
www.squidalicious.com
www.blogher.com

Honestly, I don't give a fig about strangers judging how I parent my autistic son. I know I'm doing my best with all three of my kids, and am also constantly learning from my mistakes. Plus Leo has the same right to be in public as anyone, as long as (also like anyone) he's not being disruptive. If he's having a hard time, there's always a good reason, and we move on.

Learning to Use the QuackersWhat I do care about is how strangers respond when Leo needs accommodation. And a few months ago, when I reluctantly pulled out the autism card to ask if Leo could jump the queue for a public restroom, a stranger lectured me on how autism did not justify my request, and that furthermore I was teaching my son bad behavior by asking for special treatment. Yeah. How's that autism awareness working for you?

You have to understand: that scenario was one of my worst parenting nightmares, even before the confrontation. I do everything possible to avoid being stuck in public without easy access to restrooms, because Leo can't always tolerate waiting in line. We have a clear best-practices strategy to avoid snafus: everyone makes a pit stop immediately before we leave, and pre-excursion water intake is limited. But, no one can fully regulate nature's call.

So you can imagine my amplified anxiety when, despite our precautions, Leo told me he needed to go during a bustling afternoon at Fisherman's Wharf in San Francisco -- just as we were about to board a tour. The tour staff told us there were only two public options in the entire area: the visibly over-full public restroom across the street, or the adjacent fast food restaurant. I dragged the kids out of the line and into the restaurant, where we ran smack into a wall of Autism-Is-No-Excuse.

Why wouldn't that man believe me? In what universe do people deny accommodations to children with special needs? I'm still in shock. All I can think of is that, at the time, Leo was "passing" as neurotypical. At the time, there were no indications -- other than me tightly holding my eleven-year-old son's hand -- that Leo is autistic. The man did not try to converse with Leo, and Leo was not stimming, humming, or being his version of silly -- or melting down because he needed to use the bathroom and was being blocked. My son did not appear disabled.

And that's the difference between autism awareness and autism acceptance, between knowing that autism exists, and understanding what it means: that a child can be hyper-verbal yet not grasp when or why other people expect them to say "please." That an adult can communicate more fluidly via email than by speaking -- if they speak at all. That a too-noisy room can shut down autistic people of any age. And that a cheerful pre-teen boy like Leo sometimes really can't wait to use the bathroom. That stranger obviously knew the word "autism," he just considered it a soft option. This is why I continue to advocate for autism acceptance instead of autism awareness, because awareness wasn't exactly helping Leo that day.

I'm aware that people tend to turn feral in touristy areas, but even so the incident shook my faith in social contracts. Perhaps I walk in a bubble, but I believe people will not ask for accommodation unless they need it. Does being an earnest fan of the Golden Rule make me naive?

I'm not the only parent getting the accommodation backhand. Brenda Rothman recently got the Guest Assistance Card (GAC) runaround when she took her son to Disney World, igniting the wrath of Mouse-loving special needs families by pointing out that Disney still does not have a consistent policy when it comes to accommodating autism -- even though most of those families continue to have positive experiences, as Leo had. (And yes, I am a bubble-dwelling naif, because Brenda also discovered a site where people fake disability to get a GAC.)

IMG_7601.JPGThankfully that man did not have the power to ruin our day, because other people do believe in accommodation and social contracts. Leo was able to wait a bit, and the next person in line let our boy go to the front (we thanked him profusely). And even though we missed our scheduled tour, the very understanding staff put us on the very next ride. We still had a great time, riding amphibious vehicles all over our fair city and right into San Francisco Bay.

Please, if someone tells you they or their child desperately need accommodation -- please try to do what they ask. Even if you can't tell by looking that they have special needs. And especially if they are as wild-eyed and frantic as I'm sure I appeared that day. Try to understand that it is mortifying to ask in the first place -- I knew everyone else in line was there on urgent business, too. But please, please: try to believe in me, and my son, as we believe in you.



A version of this essay was published at BlogHer.com.

Friday, January 11, 2013

MMS: Yes, It Is Bleach

Emily Willingham
www.emilywillinghamphd.com
www.forbes.com/sites/emilywillingham

When we wrote previously about the use of MMS, a bleach compound, administered orally or as enemas on the promise that it would “cure” autistic people, we received many, many comments in support (or defense) of using MMS. Many people exhorted us to 'do our research,' to not 'jump to conclusions.' One of the most recent comments went as follows:
"Your 'argument' falls down immediately. It is not bleach -- the chemical structure is completely different. This is where unbiased researchers like me stop reading -- you can't even get the chemistry part correct so why bother. If you can't be bothered to research your subject then please don't write about it, it really is that simple."
Weary of this kind of assertion and the ad hominems that always seem to accompany the defensiveness, I offered to this particular commenter the following suggestion:
"Why don't you pour some on a black t-shirt and see what happens?"
After writing that, I bethought myself: Why not pour MMS on something dark and see what happens?

So, I did. Yes, Dear Reader, I ordered MMS -- I paid money for this stuff:


...and then I did the following:

1. I read the instructions, which include a warning to "keep this out of reach of children." I'd suggest also keeping it outside of children.

Click photo to enlarge

2. I followed the instructions, mixing the two provided solutions, the MMS and the activator, 1:1. I ended up mixing in 10 drops of each. Then, lacking an appropriate black t-shirt, I got a navy blue cloth napkin:


3. I added some drops of MMS to the navy blue cloth napkin in a specific spot.

4. I added the same number of drops of the "activator" to another, separate spot.

5. Then I added drops of the mixture, mixed as directed onto a third spot on the napkin. [NB: I did not add "2-4 oz of water or juice" as this was simply to determine the bleaching properties of the compounds.] By the way, once I completed this process, it took hours for the bleach smell to dissipate, and it lingered in my olfactory passageways for hours. 

These additions are the top, middle, and bottom spots, respectively, on the image below:

MMS, mixer, and the two together, just added,
top, middle, and bottom, respectively.
6. Then, I waited and took pictures at various intervals.

About 1 minute of after application.
At about 10 minutes after application.
We flipped the napkin to show where
the mixture had soaked through and was
already discoloring the fabric.
Within an hour of application. Directions
say to drink solution "within 1 hour."
After a wash.
Experiment completed. Data analyzed. Conclusion? MMS alone bleached the hell out of that napkin. The mixture also discolored it. Together, MMS and its "activator" operated as ... a bleach.

Now I get to say: This is your child's gastrointestinal tract:


This is your child's gastrointestinal tract on MMS, an "intervention" that AutismOne saw fit to feature at its most recent conference and that it still features on its Website:


Get the picture? MMS. Is. Bleach.

Wednesday, January 9, 2013

Autism Sweeps

Jennifer Byde Myers
jennyalice.com


I get a note each afternoon from my son’s teacher. She emails me and let's me know what Jack did that day, any struggles he had, and provides information about what’s happening in the classroom, and around the school. It's efficient, an easy way for me to catch up on what he's doing in school, and a great way for each side of the equation to have context for conversation with Jack. 

When we go out to dinner at Jack's favorite restaurant, I write his teacher, then she and the aides can ask him questions about what he did the night before. It's also great that the email goes to both my husband and me. So many times in the past I would read Jack’s little school journal, or talk to the teacher when I picked up Jack from school, and that information would never make it all the way back to my husband. It is fantastic for my two favorite guys to have something to ‘talk’ about.

There is the usual update about OT and PT, and how well he walked on their social outing. I love hearing about his art projects, because art isn’t something he likes to do at home, and I've never been a big fan of messy paint projects. And while I know that they have a yoga class every week, I know that they adapt a lot of the moves for him because he doesn’t really like to sit still, and doesn’t like his body being manipulated in any way. But I’ve seen him stretch out across the lawn, so I know that some of those moves are probably familiar to his body with those hypermobile limbs. These are all things that he really only does at school, but I know we could do them at home if we wanted to.

But the thing I can’t get over, is that lately I’ve been reading that he “did chores at the end if the day.” Chores? Yes, chores. At school he clears his plate after snack. He wipes down the table. He pushes in his chair. Of course he's doing all of this with help, physical prompts, vocal prompts, and more commonly hand-over-hand-- but he is still doing chores. He never does any of that at our house.


This chores thing has actually come up recently, with my daughter noticing that she is held to a different standard when it comes to cleaning up her messes, and participating in the daily maintenance routines of our house. She hasn’t exactly complained, okay, maybe she has, but she knows that Jack doesn’t have any chores at home. On my best day of parenting, I would create one standard, then adapt that to help Jack meet that standard too.

So now I’m thinking, well why doesn’t he do chores? Shouldn’t he be doing the same things at school and home, so we can reinforce learning? It’s not the first time that he has been capable of a skill in one location but not another. For consistency, I believe he should have benchmarks and milestones that are similar to those that are set for him at school, and as he learns in one environment we should see the behavior both at school and at home. This transfer of skills can take time, and I’m aware that Jack is on his own schedule of development. 

I have tried a few times to help Jack carry his plate to the sink after dinner at home, but with no success. He turns into a pile of boneless chuckles, melting to the floor.--sweeping brings on skipping through the dust piles.

But perhaps, couldn't there be another thing at play here? Maybe this isn’t entirely about skills. Perhaps he just doesn’t want to do chores at all, because what 12-year old really wants to clean up anything? ever?


A version of this essay was previously published on goDandelion.com.

Monday, January 7, 2013

No Evidence Supporting Chelation As Autism Treatment

Emily Willingham
www.emilywillinghamphd.com
www.forbes.com/sites/emilywillingham

Image source: pixabay.com
Chelation is a “treatment” for autism promoted by the likes of Jenny McCarthy’s Generation Rescue group and others in which a chemical that binds metals is (usually) injected or infused into an autistic child with the intent of removing said metals from the blood. Now a review of the scientific studies on chelation and autism has concluded that not only is chelation ineffective, it can be dangerous. Indeed, chelation appears to be a case study of the dangers in using children as guinea pigs for random autism-causation hypotheses with no basis. According to Tonya Davis, Ph.D., lead author of the paper, quoted in a news story about the publication:

“Chelation therapy represents the ‘cart before the horse’ scenario where the hypothesis supporting the use of chelation was not validated prior to using it as a form of treatment. Evidence does not support the hypothesis that ASD symptoms are associated with specific levels of metals in the body.”
A review like this is relevant because according to the authors, 7% of autistic people have had chelation performed on them, and one survey of parents put that value at 8%. All of this in the absence of evidence that it is effective … or even observations supporting a hypothesis that it would be.

The reviewers examined five studies involving autism and chelation, in total including 82 participants. But most of the studies also rolled in other therapies simultaneously, making it difficult to pin down the effects, if any, of chelation. These other therapies included chemical castration with the hormone Lupron, various speech and occupational therapies, Ritalin, and clonidine.

The authors found that all five studies yielded evidence that was “insufficient” to establish certainty of a chelation effect. Three involved no experimental design, one lacked a control group, and for one, the “control” group received one round of chelation while the “experimental” group received seven. Only one study required verification of high levels of metals, the medical indicator that chelation is needed. None appear to have been blinded. Only one study reported positive results, and it was not blinded and did not measure participant metal levels.

Like any medical intervention, chelation is not risk free. Side effects, according to this review paper, can include vomiting, hypertension, cardiac arrhythmias, and hypocalcemia (low calcium), which can lead to fatal cardiac arrest. In fact, a five-year-old autistic child died from exactly that under chelation therapy. These risks are so real that a 2008 clinical trial of chelation for autism was suspended as a result. The review authors also note that one rodent study found that one chelation agent caused “lasting cognitive impairment” in rats. Eep. See, the thing is, our body uses metals like calcium to maintain cell communication, including among heart cells. Stripping those metals away can have fatal consequences.

In the discussion of the findings, these authors don’t mince words. They mention putting the cart before the horse and go so far as to say that “the use of chelation to remove metals from the body in order to ameliorate ASD (autism spectrum disorder) symptoms could be seen as unfounded and illogical.”

The current estimated prevalence of autism is about 1% among children in the United States, which has about 76 million children in 2012. If 8% of them are being chelated, that means that there are about 61,000 children who have undergone a “treatment” for autism that is “unfounded and illogical,” in addition to being hazardous and potentially fatal. And one of them has died. That’s where the autism-mercury-vaccine scare that kicked off in 1998 has taken us.



A version of this post was published at www.forbes.com/sites/emilywillingham.

Friday, January 4, 2013

I Am a Mother

Elizabeth J. Grace
www.tinygracenotes.com

Layenie, my wife, is a pediatric nurse. I feel very comfortable asking her questions about the health and development of our young sons. They will turn one in January and are ahhh they are soooo adorable ... but I digress.  I might be digressing because the beginning of this post hurts a little to write.

The other evening, I had been staying home with the boys, which I do once a week, because, you know, child care costs a lot, and also, as I wrote, adorable. Benjy was doing this thing with his hand which is very like something I also do with my own hand, so this is what I said -- and although I am not usually able to hear myself, I can derive a proper quote from the ensuing conversation:
Ib: "See what Benjy's doing with his hand there ... is that OK?"

Layenie: "Yes, he's learning to wave, which is developmentally -- wait. Wait a minute. Of course it's OK. Even if he's doing it just for fun or because it feels good, it's going to be OK, OK? You do things like that, and you're OK. Does it ruin your life?"

Ib: "Well..." (I was thinking about the past, about the hard things, about the things I didn't want my boy to have to live through, like school, if he is like me.)

Layenie: (As if she could hear the inside of my head, rapidly changing the scenery) "How 'bout now? Does it ruin your life now?"

Ib: (Contemplating the Now, beaming, and ... there goes my flappy hand) "No. My life is awesome."

Layenie: "I love your hands and I love you." (This made me cry tears of joy, and made me think.)
Then she carried on doing what she was doing with the kids but I went inside my own head a bit and crawled all over myself: hypocrite much? Would I have wanted to silence Benjy's hands? No. I am not a hypocrite, I just wanted to help him gird his loins, if necessary, for the slings and arrows of -- but then I thought about it some more -- aworld that is largely not the same as it was. The world is better now. It really actually is, and it is moving in the right direction.

Not that it is easy now.  Now, we are called burdens and a crisis and a national epidemic. Horrible"schools" still need to be closed yet and children are being killed to this day as a result of the way we are portrayed.

But people are starting to protest this, people's mothers are starting to notice and say "Hey: stop talking about my baby like that, I'm talking to you: stop it right now." And people are going to have to listen. And we are saying it and we are typing it and we are even getting into Washington DC and on TV and saying "Hey: stop talking about us like that, I'm talking to you: stop it right now." And people are going to have to listen. And things will change even more. Autistics and our families together.

When I was in school, we were called nothing, we were nowhere, we were hidden in institutions, a mystery, something to be very afraid of. Violent, "idiot savants" (I have actually been called "idiot savant" to my face in front of a room full of people) and "morons" and "mentally retarded with autistic features" (I am sorry for the language but I have read so much of this language is in the historical files of my friends).

Any "refrigerator mother" who was defiant or foolish enough to keep us out of institutions deserved what she got and there weren't enough of those to get us on protected lists or legal classifications or parent to parent support networks. Our mothers, forever at fault, had no way to find each other, and every reason to hide themselves in shame trying to rebuild their lives, since most of them would never see their children again. For those who kept their children against all odds, they needed support even more, but where to find it? Probably we would become homelessness statistics and end up in jails if we could talk; and if we couldn't, the protection people would put us in institutions anyway and arrest the alleged "refrigerator mothers" who had tried to keep us out, if they were poor, or make them poor, if they had financial means.

The world changes slowly, but it changes, and I am celebrating that, today. If Benjy does his hands like that because he is stimming, if JoJo rocks because he rocks like I rock, may the world keep moving into the world I want it to be for him. May I be tireless in helping to see this happen.

I am a mother.  I know what the depth of this prayer feels like.

Thanks for listening, and thanks to all who pray and enact it with me.

----

A version of this essay was originally published at www.tinygracenotes.com.

Wednesday, January 2, 2013

It's About Respect

Amy Sequenzia

Respect for one another is one basic quality if we want to have meaningful conversations and relationships with other human beings. The ableism that disabled people experience is a form of disrespect.


I have been trying to understand why some people find it so difficult to act respectfully towards disabled people, especially disabled adults.

I am talking about people everywhere: people who do not have any experience with disabilities; people who have spent many years among the disabled; professionals who cannot see the whole person, only deficits; “advocacy” groups who refuse to stop using the “pity” language; even some parents, who love their children but forget that, by disrespecting us, they are disrespecting their children too.

I am trying to understand why ignoring my presence, in my own home, seems to be a visitor’s acceptable behavior.

During a state mandatory visit, two nurses came to my home, greeted everyone, looked at me and ignored my presence. They said that the most important thing was the paperwork. Not safety, respect, friendship, health or happiness -- paper.

After many weeks the agency supervisor apologized for the offensive behavior, not to me, but to my friend. The nurses didn’t apologize, someone who never saw me did.

Many more weeks passed and I got one apology. Only after I demanded one and only from one of the nurses.

Why did they think I did not deserve a simple “hello” in my own home? Disrespect.

There is also the woman who had just met me and wanted to place her hand on my forehead and pray away my “affliction.” She did not ask me if I wanted that and she did not offer a prayer to any one of the “normal” people around. Disrespect.

One doctor refused to talk to me because I “did not understand anything.” Disrespect.

A dentist kept referring to me as part of the “low-functioning” group who needed compassion -- after I mentioned my essay “Non-speaking, ‘low-functioning’” and that I don’t like the label. Disrespect.

All these people were supposed to be allies to the disabled or at least show some basic manners. Instead, they only showed how they see me: needy, and how they see themselves: superior.

The disrespect is also obvious when some advocacy groups paint a disturbing and incorrect picture of disabled people. It seems like we need to be always suffering and sad to be worthy the work of such organizations. That is not respectful. We don’t need their work because we are hopeless, but because society in general is not accommodating or accessible to us.

I know that the more dramatic the picture, the better are the chances to get attention. But the individuals running the organizations can, sometimes, show disrespect when dealing one on one with us, and treating us as if we were children.

They rarely invite us to give our opinion. That’s disrespect.

During a conference, it looked like I wasn’t going to be disrespected. But when the organizers published my words, they changed it. They changed how I identify myself because they like person-first language. They never asked me. The words were mine and they changed them. This is disrespect.

And there is much disrespect coming from some parents.

When an autistic self-advocate speaks publicly, and well, about issues that affect all of us, they are dismissed and even mocked.

They are called “not real autistics.” This is disrespectful. Only because you don’t see their struggles, it doesn’t mean they don’t have them. Some of my friends who are speaking autistics, at least most of the time, who work, go to college, live independently, also have their moments of frustration, they also have meltdowns. Talking about them as if they are not the “real thing” is disrespectful. Maybe they are not having a seizure (some do have them), maybe they are not banging their heads (some did, some still do), they can take care of their basic needs, like showering and eating (some forget about these things), but it is still disrespectful to treat them as not really autistic only because they can, for the most part, manage the particular issues they face. And it is disrespectful to dismiss their advocacy only because they are succeeding as autistics.

Some of them were homeless, they were abused and they starved, only because they are autistic.

A group of mothers who do not consider successful autistics “real” autistics made a video that ends with: “we want our children to speak.” This disrespects me. I can’t speak. I don’t want to speak. People can communicate in many different ways. Being non-speaking does not make anyone “more autistic,” or a lesser person. What those mothers said is disrespectful to me because I do self-advocate, with great support of my speaking autistic friends, even though I don’t speak. Should I not advocate? But I am a lot like the autistics in the video, the ones they call “real autistics.” Am I a “real autistic?

If they spent one day and one night with me they would see that I am a lot like their children.

They are then, disrespecting their children by saying that they can never participate in, and benefit from, the advocacy of other autistics, like the ones perceived to live a life free of real autistic related issues.

Respect should not be a privilege assigned to non-disabled only; it should not be a privilege of non-disabled first.

Respect should not be only for people who agree with us.

Respect is basic civility and kindness.

Respect is what we all deserve and what allow us equal participation.

Respect is the opposite of baseless judgment.

We all deserve to be respected for who we are.

----

A version of this essay was publised at www.ollibean.com