Thursday, March 23, 2017

After an Autism Diagnosis: 13 Necessary Next Steps For Parents

Shannon Des Roches Rosa
www.squidalicious.com

If your child has recently been diagnosed with autism, as my son was in 2003, here's what I want you to know: Learn from me, don't be me. 

When professionals first started suggesting that my Leo might be autistic, I reeled. I didn't know anything about autism at the time, except as disability version of a child-stealing bogeyman. When my son's diagnosis was confirmed, I was terrified. And then I was depressed. And then I got to work on figuring out how to parent an autistic kid. And then I made a lot of mistakes. And then I rued those mistakes and tried to do better. And then I wished it hadn't taken me so damn long to figure out the best ways to support, help, advocate for, and express my love for my now-teen son—who has always deserved better than a reeling, terrified, depressed, confused, and regretful mom. 

Photo © Jonathan Mandel
[image: white toddler boy being smiled at by four
adoring members of his extended family.]

I recently came across a happy photo of my family and my parents, taken around the time Leo was first diagnosed. Leo was obviously such a cute, sweet little guy, radiating and reciprocating joy! Yet that sweetness and that joy was not my focus at the time, because I was so preoccupied by negative assumptions about autism, and also by the urging I was getting from so many sources to "fix" Leo, to hurry up and get him into various therapies so he wouldn't miss any supposed windows of opportunity. 

I wish I'd known then what I know now: that I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what people assumed autism made him. I also wish I'd been able to recognize and dismiss all that debilitating ignorance, fear, and confusion. 

Ideally, I'd go back in time and advise (and pinch) my former self. But since that's not currently possible, my next best option is to share some hard-earned wisdom with parents who are just starting out, so they can avoid some of the mistakes I made, and do right by their autistic kids. 

So here it is: the advice I wished I'd been given, when my son Leo was first diagnosed with autism. 

1. Give yourself time to adjust.

Negative messages and images dominate media coverage of autism, and are the main reasons autism tends to scare the crap out of parents and parents-to-be. What most of these people don't realize is that they'll be parenting the same kid they were parenting before the autism diagnosis arrived, and that diagnosis just helps steer you and your parenting approach, in the right direction. So give yourself time to be cautious and thoughtful, and adjust your course as needed.

There's no denying that autism can bring challenges for your kid or your family, no matter your child's personality or specific needs. But please know that most problems you encounter will be due to lack of understanding and accommodation about autism from other people and society in general, and not because of autism. This is especially true when your child's needs are less evident: if they don't appear to have a language delay, or if they need support with filtering overwhelming everyday environments, as in processing delays or sensory sensitivities.

You also need to give yourself time to understand why those nasty and ever-present cultural messages about all autistic kids being lost in their own worlds, being isolated, lacking affection or empathy, etc., are so hurtful and mistaken, so you can push back against them. Those messages are based on misunderstanding of autistic people and how they interact with and perceive the world, and are just not true. By pushing back, you can help make the world a better place for your child right now, and also for the adult they will become.

2. Give the people around you time to adjust, and keep them in the loop.

Like me, my friends and family didn't know a thing about autism when Leo was first diagnosed. They also didn't know what to say to us, beyond platitudes. I don't really blame them; we were all in that ignorance boat together. But I do wish I'd been together enough to feed them lines like, "it's okay to ask us questions, but we might not know the answers yet," and "feel free to keep inviting us over; we'll say no if it doesn't work."

One way you can help your people become your team—and by helping them, help your child and yourself—is by inviting folks along for the ride. You can post status updates on private groups on Facebook, on blogs, or though periodic group emails (being mindful of your child's privacy in the more public areas). You can let your people know it's okay to absorb information without commenting. This way, you have less to explain when you see them in person, and the new information you're figuring out won't be foreign to them. 

Hopefully, these efforts will mean you and your child become surrounded by people who understand and support you. (They may also decrease the number of well-meaning but insulting "I could never do what you do" comments.)

3. Give yourself time to process information critically.

There is so much bad autism information out there, especially the hawking of sciencey-sounding "cures" (there's no such thing) or "recovery" (ditto). But there's so much good information, too! And the more informed you become, the more your perspectives on and understanding of autism and parenting will change -- ideally for the better.

Wired journalist Steve Silberman's book NeuroTribes*, for example, goes deep into the history of how we define autism, how who qualifies as autistic has changed over time, why there's no autism epidemic, the horrifying origins of Applied Behavioral Analysis, and the emerging leadership of autistic people themselves—and has changed the way a lot of people think about autism. It's a must-read. 

While I'm not a huge fan of "mommy instinct," I do think parents need to pay attention to their autism information spidey sense. If someone is pushing autism information that does not stand up to even the most cursory research—for instance, that autism is caused by misaligned energy pathways, or is a vaccine injury—run away and find better information resources.

4. Give yourself time learn which organizations and people to trust.

Most people outside the communities consider Autism Speaks a trustworthy autism resource. Yet, in my experience, autistic people and their supporters tend to criticize Autism Speaks, for not including any autistic people in its leadership, and for basing their fundraising campaigns on fear of autism and pity for autistic people and their families. 

Autistic-led organizations like The Autistic Self-Advocacy Network (ASAN) tend to focus on the needs of autistic people of all ages and abilities, and provide toolkits and other advocacy materials. When I'm looking for good information, I tend to watch what ASAN and their allied organizations are posting about.

My biggest shift in understanding happened when I encountered autistic people and their writings, and learned to trust them. Julia Bascom's essay Dear Autism Parents felt scary and confrontational when I first read it several years ago, but now sounds impassioned and reasonable—as well as a wake-up call to parents who misunderstand autistic adults, their passion for helping today's autistic kids, and their right to assert authority in understanding the autistic experience.

While evaluating whether an org or person is reliable, you may need to work on your own defensiveness. If you get angry at a person's autism information or an autism org's position, consider that you may actually be overwhelmed by the possibility that you had been getting your information from unreliable sources. Give yourself the space to walk away and think things over. 

You also need to learn to differentiate between those who are legitimately angry over unfair treatment, and those who attack unfairly; you should at least listen respectfully to the former. And, for the sake of all that is holy, avoid toxic parenting groups—meaning parents who at first glance appear reasonable and compassionate, but would "understand" if you hurt your autistic child. 

5. Give yourself time to figure out what autism means for your child.

Autistic brains and thinking processes can be very different from non-autistic brains. If you're not autistic yourself, learning to recognize and understand these differences may take time, as well as trial and error. What a non-autistic person might think is emotional manipulation or callousness may be logic, executive function challenges, or genuine confusion: An autistic child may refuse to clean their room not out of defiance, but because they can't comprehend taking on large multi-step processes without a checklist; or a child may laugh when other people are in trouble, not to be callous, but out of relief that they or their loved ones aren't the distressed party. 

Autistic perceptions of pain can also be atypical—some autistic people are hyposensitive, others are hypersensitive, some are both, and some just have a hard time interpreting pain signals. Be vigilant when your child appears to be injured, because they may not be able to tell you just how hurt they are, even if they are otherwise articulate.

Sensory experiences are also different for many autistic kids. They may not be able to filter out lights, sounds, or touch—to the point where just walking into a grocery store can cause a meltdown. If your child refuses to enter large, bright, loud, or bustling environments, consider that it may actually be painful for them to do so. If they're not doing well in their classroom, consider that they might need noise-canceling headphones, or tinted glasses, to help filter out sensory stimuli so they can focus. 
A large percentage of autistic people have clinical-level anxiety, and may learn to self-soothe through stimming or creating elaborate, predictable, and therefore safe, routines. Try to understand why your child may be behaving differently than their peers, instead of getting embarrassed by your child behaving differently than their peers. 

Also: Become educated about autistic learning styles. Not all autistic kids are math prodigies. In fact, studies show that most don't have superior math skills, but rather average or below-average math skills. In addition, co-occuring learning disabilities like ADHD, dyslexia, or dyscalculia are quite common too, and can be overlooked or termed "laziness" if your child is perceived to have academic strengths in other areas, or if your child is a person of color. 

6. Give yourself time to figure out what communication looks like for your child.

Everyone communicates. Even kids who don't speak. But autistic kids who can speak fluidly may not be able to communicate all their intentions. Be very careful about this, as those seemingly fluid talkers often have their communication needs underestimated, and suffer as a result. 

And for those kids, like my son, who don't speak or are not fluid speakers: We need to be careful to presume competence, to treat them as though they can understand everything you say. But that's not enough. As Julia Bascom writes about parents who discover that their child is more capable than they'd realized:
"...they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person."
Your communication goals for your child should be to find their optimal communication strategy and style—whether that's speaking, using a symbol-to-speech device, or typing—and not to prove to the world that there's a hidden child locked away inside your actual child right there in front of you.

7. Give yourself time to figure out which supports, schools, therapies, and environments will help your child succeed.

(This is where you rely on those trustworthy resources, as much as you can.)

8. Give yourself the space to be flexible about needs, and pick your battles.

You may need to adjust your rhythms to those of a kid who doesn't sleep much, whose limited diet means bringing their food along whenever you don't eat at home, who thrives on medications you'd previously consider terrifying choices, who suddenly can't tolerate certain environments and needs to leave. Remind yourself that your child isn't doing any of those things by choice, and renew your commitment to understanding their autistic needs.

9. Give yourself time to find autistic role models for your child.

If your child doesn't know any other autistic kids or people like themselves, they may feel alone and isolated (or even broken, or defective). Don't let that happen if you can do anything about it. I have found good role models for my son in the blogs of autistic people, and in books about autistic people. And, of course, through hanging out with autistic people! 

As much as you love your child and accept your child (and as much as those feelings may be reciprocated)—if you're not autistic, then you're not part of the community your child does belong to. So please help your child find their tribe. 

10. Give yourself time to think about shared traits.

By this, I mean traits you might share with your child, and other family members might share with your child. Even if you yourself don't have enough traits for a diagnosis, many parents and siblings get diagnosed with autism themselves after another family member's diagnosis makes them more aware of what autism can mean. This is especially important for female siblings and family members, as autism in girls is different than autism in boys and is often overlooked due to gender bias in diagnostic criteria. 

Having multiple people with autistic traits in a home can mean greater understanding, but it can also conflict: In our house, we have some people who like to make noise, some people who are rather insensitive to noise, and some people who are overly sensitive to noise. If the noise maker is happy, the noise-avoider is miserable, and the noise-oblivious person (okay, me) is too often wondering what the hell is going on. We are still learning to negotiate our space to suit everyone's sensory needs.

11. Give your child space to grow and change.

Not just when puberty hits (boy howdy, this is where we are now, and it can be different for autistic kids—it can really scramble communication abilities, emotional stability, and coping capabilities), but in terms of autistic development being different than non-autistic development. I worry a lot about people whose families stop trying to teaching their kids skills because they're past some imaginary development window, when autistic people actually tend to continue to gain skills throughout their lifetimes, more so than non-autistic people.

12. Give yourself time to figure out what your child really enjoys.

Surrender to that joy whenever possible. Your kid is a kid, after all. Don't let people frame your kid's enthusiasms in pathological terms like "special interest" or "splinter skill." If your kid likes something, and they're not hurting anyone, let them like liking it. 

13. Give yourself time to plan for your child's future without you.

For kids who do not have life-threatening health conditions, there's no reason to think your child won't outlive you. And that's how you need to plan for their future—as one without you in it. Denial helps no one here, and could actually really imperil your child. So start figuring this out now, and then you'll have one less thing to worry about. 

Now that you are overwhelmed:

I realize this is a lot (a lot!) of information to digest. Give yourself time to think it all over. If I just made you feel like you stepped into autism parenting information quicksand, come back later, or try to portion it out and think over various bits of advice as needed. Know that, even though I've been writing about parenting and autism since 2003, I honestly learn something new every day. I know I haven't learned nearly enough yet—but I also know that my son and I both benefit whenever I learn something helpful. So keep on learning and loving, and let me know if I can ever help.

Note that I could put in a link for every assertion I made above, but then this would look even more like a research paper. If you want background on any unlinked topic, just ask. Please also know that this is a brief overview, and that I could write a separate essay on each point above.

----


Disclosure: Our family was consulted in the writing of NeuroTribes.

A version of this essay was previously published as a parenting advice column at BlogHer.com.

Thursday, March 2, 2017

Untwisting Perceptions: Autism, Parenting, and Victimhood

Shannon Des Roches Rosa
www.squidalicious.com

Content note: this article discusses murder, disability, and mental health.

There is a horrifyingly typical coupling of devotion with murder, whenever disabled people are the victims. A recent example is Ruby Knox, an autistic young woman, who was murdered by her mother Donella, in Blenheim, New Zealand. Donella drugged Ruby, then suffocated her. Both the reporting and the judge on the case portray Donella as a "loving mum who was driven to kill her daughter."

I'm here to say: Fuck that.

I need you -- and judges and reporters everywhere -- to understand that, however difficult it may be for families to support their disabled loved ones, murder is never excusable. There are always other options. Always.

That last message is especially important when you consider that disability-related filicides like Ruby's are more common than the occasional high-profile story might have one suppose -- according to Julia Bascom of the Autistic Self Advocacy Network, the average rate for these murders is One. Each. Week.

Another reason these killings always knock me off my feet: reporters' descriptions of victims like Ruby are so similar to how my own son Leo has been perceived by some journalists, and even some acquaintances. And because Leo needs (and deserves) full-time support, my husband and I are automatically considered good, selfless people.

This is what keeps me up at night: Would people really sympathize with me if I hurt my son? Could they really justify the loss our wonderful Leo -- who depends on, loves, and trusts us whole-heartedly, and whom we love right back; who is as capable of being as sneaky and defiant as any teenage boy, but who lacks malice almost entirely -- because he was born with autism and a communication disability? Would they write off his murder as a burden being lifted?

I blame the tendency of such twisted dismissals of the value of autistic lives like Leo's on the constant negative media barrage about autism, especially the recurring theme of how awful it is to be an parent of an autistic kid like my son. When stories about "loving parents" violate the most private moments of the autistic children in question, as does the recent New York Times Modern Love podcast For The Boy Who Makes Waves, listeners are further conditioned to see parents as victims and their kids as unreachable and inhuman -- even though dehumanizing his son was probably the last thing author Joe Blair intended. It's just that ... parents rarely write mainstream accounts of autism any other way. And autistic people who don't tell their own stories are rarely portrayed as fully human.

I'm not saying parents like me, or like Blair, can't write about parenting, or that we can't be honest about how we feel. But we have to always weigh what we say publicly against the potential long-term harm to both our children and disabled people like them, and be vigilant in monitoring those boundaries.

With that in mind, I'd like to revisit an essay I wrote five years ago, on autism, parenting, and victimhood.

----

CalTrain + green straws = Leo joy!
[image: A happy white teen dude with curly
brown hair, riding a train with his mom.]
When TPGA republished my BlogHer essay Autistic Lives: Not Less Valuable, about the murders of George Hodgins and Daniel Corby at the hands of their parents, one commenter criticized my lack of understanding for the parents' mental states, writing, "This was not just a mother not willing to be as strong as you."

That comment was a bifold WTF to me. It dismissed the point of my essay (the horrifying dichotomy in our society's perception of parents who murder their children: with disabled children, it's considered understandable because of caregiver stress; with non-disabled children, it's considered unforgivable). But that commenter was also making a huge assumption about me.

Because I'm not strong. I'm lucky. I have a great husband, great family support, Leo goes to a great non-public school, he has great respite -- and I belong to supportive communities both offline and on. Those communities are generous in sharing their experiences and helping me learn to both understand Leo better, and be a better parent to him. They are strong. I am not.

I'm actually prone to depression, and have been in a serious funk for a very long time (though now I'm finally on medication, and it helps). If you know me, though, you might have noticed -- I'm usually a 78 RPM girl, but right now I'm set to 33 RPM. You might not have noticed if you're only used to dealing with my awkward or brusque sides, because those haven't changed. Or you might not have noticed unless you're waiting on a deliverable, or need me to synthesize multiple moving parts. You might not notice because I can rally in person if you're not expecting much in the way of coherent thinking or speaking. Small talk? Coffee? Beer? Retweets, Facebook posts? Sure. I just can't process much that's non-linear at the moment.

Thing is -- and I want to be clear on this -- my depression has very little to do with being a parent of a high-support autistic teenager. Some of it has to do with parenting in general being an overwhelming job, most has to do with not being able to fix broken matters over which I have no control. And I'm a fixer, a doer. Helping, fixing, signing off, pressing "send," checking that box and moving on to the next task is what keeps me fulfilled and happy.

Not being able to fix things fucks me up -- there's no non-NSFW way to describe it. That is why, when Leo was first diagnosed with autism in 2003, and media portrayals of autism were all horror shows and head-banging and soulless eyes and doom, I went into the deepest depression of my life. With horrible insomnia (I used to sleep like the dead), and occasional pulling my car to the curb, because the rules of the road had stopped making sense.

I was depressed because I thought my son was broken, and I didn't know how to fix him.

And it took years, but I eventually realized that parenting is not about fixing. It's about supporting, accepting, finding best practices, and fighting for your kids' rights. It's about unconditional love. And it's about putting your kids first. About making other people see your kids -- and kids like them -- the way you do, the way every kid deserves. About accepting the changes kids bring to your life, even if they weren't what you expected.

I don't want any parent to have to go through the new autism diagnosis depression grind I did; that is part of why I co-created Thinking Person's Guide to Autism. But even a fabulous autism resource can't magically fix everything for parents, not as long as our society continues to portray autism as The Worst Possible Thing That Could Happen To Your Child. There's still the initial shock to get over. And then, hopefully, the epiphany that autism is not The Worst Possible Thing, after all. That you're all going to be OK, and that you're not alone.

But even parents who ramp up quickly to accepting their child as autistic still need time to adjust. Anyone does, when they go through a significant reality rearrangement. Depression and anxiety are understandable during that transition. And anyone who is depressed deserves help. The need to get help is all the more critical when the depressed person is a parent or caregiver.

For me, the tragedy sets in when parents like me -- through isolation, lack of support, or through communities that reinforce negativity -- continue to believe that autism is The Worst Possible Thing, never learn how to support their kids properly through crises or with communication aids, never witness or appreciate their autistic children as their own authentic selves, never get to make contact with the many many amazing autistic adults whose stories and very existence defy mainstream negative autism stereotypes. I don't know what I'd do or where I'd be if Leo and I didn't both have supports and understanding and community. And I worry, a lot, about the children and families who don't have what we have. That is why I do the work I do.

Anyhow. It's been more than a decade since Leo's autism diagnosis. I no longer worry over autism as a nasty boogeyman that I can't fix, or could fix if I tried hard enough (a quixotic and demeaning approach at best). I worry about my beautiful son, who is autistic. I worry about what he needs from me, and whether I'm a good enough parent, a strong enough person to provide it. Mostly I just do my best to support him.

It's not always easy. Sometimes it sucks, like when my kids brawl. But you have to understand that the resulting, heart-cleaving sorrow of Leo and one of his sisters having a standoff is not that different than that of Leo's sisters being locked in an impenetrable yelling cycle. My pain comes from the helplessness of not being able to instantly make everything better for my children, these three people who were ripped from my soul and whose unhappiness has the power to destroy that soul entirely.

I'm going to be fine, I've waited out periods like this before. When my kids aren't trying to take each other out, they are my joy and my solace, as is my husband. I have my techniques for keeping my nose above water -- I do a crossword puzzle every day to keep my brain from rotting out entirely; I make time for books and podcasts that keep me learning; I make checklists of tasks that result in physical manifestations of done-ness, and allow myself to attack them in phases if need be. It all helps.

I'm not strong. But I'll get by. Sometimes, that's all any parent can do. And finding the right tools and resources to get by -- that has made all the difference.

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Resources:

Autism Memorial (autism-memorial.livejournal.com) "is dedicated to remembering those autistic people who died because of malpractice, lack of resources or support, or outright murder. Occasionally, a news story will be widely covered, but most cases receive very little memorial. Even when an autistic person is murdered by a family member and it becomes a big news story, the autistic person often becomes lost amidst sympathy for the murderer. This site is here because everyone should be valued, and everyone should be remembered."

The Disability Day of Mourning website (disability-memorial.org) "is a memorial to the people with disabilities who were victims of filicide. Active cataloging of cases started in mid-2014; this site contains cases from 1980 to the present."

The Autistic Self-Advocacy Network's Anti-Filicide Toolkit (http://autisticadvocacy.org/home/projects/disability-community-day-of-mourning/anti-filicide/) "This toolkit is intended to provide advocates and allies with concrete tools and resources to use in their own communities, including in response to local incidents. The toolkit includes information about how to understand and respond to filicide, frequently asked questions about filicide, and a guidebook for Day of Mourning vigil site coordinators."

The Ruderman White Paper: Media Coverage on the Murder of People With Disabilities by Their Caregivers (www.rudermanfoundation.org/blog/article/the-ruderman-white-paper-media-coverage-of-the-murder-of-people-with-disabilities-by-their-caregivers) "Approximately once a week, a person with a disability is murdered by a family member or caregiver. We have found that when these murders are covered, they are often called “mercy killings” which perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life. Such coverage simply must stop. It is dehumanizing and dangerously continues to stigmatize disability. We’ve found that the voices of the victims are nearly always erased to favor the perspectives of the perpetrators. This too must stop. In this White Paper, we offer insight into a difficult phenomenon and offer resources and best practices to stop the stigmatization of disability."