Letting go of (some of) the worry

I hear a lot of parents expressing hopelessness about their autistic kids’ future. Whether those kids are mildly or severely affected by developmental delays, sensory issues, and anything else related to their autism, their parents worry about what life will be like for them as adults.

But their kids are usually quite young still. I want to tell these parents that it gets better. There is no point worrying about the future when you don’t know what your child will be like in the future. Autistic kids develop more slowly, but they do develop, grow and learn. I believe it’s important to learn to *be* in the moment in general, but it’s especially vital for parents of autistic kids. It’s impossible to know what your four-year-old will be like as a 40-year-old. That is true of all kids but especially of autistic kids.

The same 40-year-old who seems so “high-functioning” may very well have been nonverbal as a child. He may have worried his parents sick about whether he would ever learn to feed himself or speak. And he may not have done all of these things until he was 10 or 19 or 27. There may still be days where he can’t find words and relies on technology to communicate. But he has come a very long way from the four-year-old he was.

My own autistic son is often called “high-functioning.” At 14, he is pretty capable, though calling him high-functioning dismisses how hard he has to work to be that way. But no matter how severely affected our kids are, what I bet we all have in common is that at some point, someone told us that our child would never do something. Or that he would need years of expensive therapy to do it. They told us to lower our expectations. Frankly, knowing what I know now, I am retroactively pissed off for all of us.

When Nick wasn’t reading by age 7, they told us he should have tutoring and various therapies. The one therapy we stuck with was vision therapy after I saw his eyes swivel in two different directions during an eye exam. But he adamantly refused to even try to read for another two years. Then, just after he turned 9, the switch flipped and he was reading. That summer, he read the whole Harry Potter series.

They told me he may never be able to make friends and that he would not have empathy. And yes, there have been plenty of other kids he hasn’t gotten along with, but those who appreciate him for who he is are the ones who were worth his attention and the ones he still has as friends. It took coaching him through many interactions and teaching him many scripts, but now that he knows how to express himself in different ways, he actually shows the most empathy and compassion of all my kids. When my two younger kids come home from school to find me lying down with the flu, they ask if this means they have to get their own snacks (LOL). But Nick gets me a blanket and asks if I need anything.

They said he’d never be good at sports because of his motor skills deficits. We let him try anyway. He tried a variety of sports through our local community center and fell in love with saber fencing. While he has always had to work twice as hard to be just as good, his focus and perseverance have served him well as a fencer, and this year he is hoping to qualify for a spot at Summer Nationals.

Oh, I worried about Nick so much when he was younger. When he was 2 and couldn’t hold down his food, when he was 4 and rejected any playmate who didn’t follow his orders, when he was 6 and chewed the neckbands and cuffs of every shirt to shreds within two wearings… the entire time from 3 months to 12 years when he was melting down constantly.

Now he is a teenager who still needs to eat on a schedule because he has no hunger cues, but the food reliably stays down.

It has been a long and winding road, but at 14, he has friends who share his interests, and he lets them have their own way often enough to keep them. But they also like his creative ideas and his logical thinking.

I learned to offer alternative stims, and he doesn’t shred his shirts anymore. Well, not a lot, anyway!

Plus there are great things about having my autistic teenager. He is truly useful around the house, not just because we have a strict chore chart, but because he likes to help. He is focused on academics at school (instead of social drama or rebellion) and is immune to peer pressure. He always follows the rules and he uses his scripts, so I can safely give him a fair bit of independence. And since Karla taught us how to accept and support him, meltdowns have become very rare. My friends who helplessly watched me struggle to parent Nick when he was younger now envy me my easy teenager.

If I could do Nick’s younger years over again, I would protect him more from sensory overload and unreasonable demands, support his physical development through fun and play instead of boring therapeutic exercises, and not expect him to act like other kids or keep up with their pace. I would build on his strengths and accommodate for his weaknesses while always giving him opportunities to strengthen them. I would worry a lot less about the “what-ifs” and just love him in each moment.

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Family gatherings, his way

‘Tis the season for some ASD-friendly advice for big family/friend gatherings. I can’t do better than Karla’s visual:

Addition 1: Don’t banish autistic kids to the kids’ table, if there is one. Sitting at a table for the meal should be optional anyway, and if they choose to join, let them sit with the adults if they prefer.

Addition 2: Regarding physical touch, people like it and some don’t, but those who don’t may actually find it painful or disorienting. Ask if it’s OK before shaking hands, hugging, or otherwise touching an autistic person, and respect “no” as answer. If you are the parent of an autistic child, don’t insist that little Johnny hug his grandma. Advocate for him.

I wish you peace and joy, however you may find it!

Was it selfish? Was it necessary?

Very soon after the horrific Newtown massacre, the killer’s brother was reported as saying that his sibling “is autistic, or has Asperger’s syndrome and a ‘personality disorder.” The first report I saw came from ABC news and it was quickly removed, but the damage was done and word spread quickly that the mass murderer had been autistic. With the pain still sharp in our collective consciousness and our society looking for explanations, people jumped on this as a reason, to some the reason, for his actions. Other news outlets picked up the item and it became a leading story among the reports on the tragedy.

ASAN and the Autism Society led the response from the autistic advocacy community, after brief debate among advocates as to whether or not we should wait, out of respect to the grieving families, before going public with our pleas to not make this about autism. ASAN decided not to wait and quickly issued a press release asking “media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime.” The Autism Society published a statement pointing out that “There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence. To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law abiding, non-violent  and wonderful individuals who live with autism each day.” Autistic self-advocates and allies helped spread the word on their Facebook pages and in their individual communities.

Many people thought our timing was poor. They criticized us for not waiting to allow the victims’ families time to grieve without the distraction of other people begging not to be victimized as well. We were called disrespectful and selfish for thinking of our own community’s needs so soon after the shooting.

Sometimes there are no easy choices. If we had waited, if we had not offered any resistance to the “autistic mass murderer” images spreading across the country, would major news sources have followed their initial reports with information showing that autism is not connected with planned violence? These quick, insistent protests from the advocacy community are the reason that when someone googles “autism and violence,” they get a list of articles showing no correlation, rather than articles about an autistic killer. They are the reason that major media outlets followed up their initial reports with expert testimony that autism does not explain this murder.

Nationally and internationally, linking the crime with autism was listed as among the many mistakes the major news media made in its initial reporting of the tragedy. Information is getting out that autistic people are much more likely to be victims of violence than to commit it.

Even so, with emotions running high and people looking for a scapegoat, the misconception that autism made him do it is very much out there.

Actual experiences and statements:

•  “So today, I’m at the Post Office, in line. A very talkative woman is talking about politics and closing Post Offices, with me (kind of) and the man in front of me (kind of). … Then, the conversation turns to gun control, and then, to the inevitable. Then, she says it: ‘Well, you know he had that condition that made him do it.’ And I say, ‘What condition is that?’ And she says, ‘You know, he had Aspergers. I work with people with Aspergers. They have a lot of compulsions and that’s what drove him to it.'”

•  “Mom said we can’t hang out with Michael anymore because he has Asperger’s.”

•  A comment on my post Autism does not cause murder: “It’s Autism and America needs to have a serious discussion about how to treat this disorder so we dont get these mass shootings!”

•  “There’s a really, really weird teenager who attends my church. He has Asperger’s. Yesterday I reported his odd behavior to the police. It’s worth reporting this kid to the authorities now that I know how dangerous this disorder can be.”

•  “Yeah well my cousin works with autistic kids and adults and she sais sic they’re violent ppl and copy everything they see on tv… these monsters need to be locked up… ALL OF THEM. Before this happens again…”

•  “How do we keep your sister’s autistic kid from turning into a mass murderer? He threw a waffle at her yesterday. I’m concerned.”

•  A Facebook page went up claiming that if it got a certain number of likes “we will find an Aspergers kid and set it on fire.” It was quickly removed by Facebook after many complaints.

•  Karla herself received this comment at work after disclosing that she is autistic while explaining why she needs her earplugs: “Whoa, really? You mean like that kid that just killed everyone?!”

If the fallout is this bad even after such a quick response from autism advocates, imagine how much worse it would have been if we had waited to counter the hurtful and dangerous notion that any autistic person could become the next mass murderer.

My son is autistic. He has to go to school with people who may have heard that autistic people are dangerous. I’m worried for him, but also relieved to know that at least some of the people who heard that initial message will have also heard the evidence that it is not true.

We all grieve for the victims of the massacre and my heart breaks for their families. It doesn’t help them for us to sit back and let another group of people be further stigmatized and possibly victimized in a different way.

When you get a leak in a pipe, you plug it right away. There will still be some spillage, but if you act quickly enough, the water damage will be less than it would have been.

So: Selfish? Only if defending yourself against false accusations is selfish. Necessary? Absolutely yes.

 

She is not Adam Lanza’s mother

…but we all know whose mother she is by now. I won’t repost it because it horrified me, but a woman wrote a blog post about her son in which she told the world that he is a future mass murderer, complete with his real name and a photo. It went viral with cheers and accolades for her honesty and courage.

Very few people considered it from her child’s point of view. Here’s an excellent response from someone who did:

No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters

When your child is part of an already stigmatized minority, whether he is autistic or mentally ill or non-white, it is terrifying to see him lumped in with a category of people (mass murderers) who are feared and hated. That is always true, but to see a child outed that way during a time when emotions are running high among the general public is utterly horrific. People abuse and even kill other people out of fear every day. This boy still has to go to school, where teachers and other kids will have read his mother’s words. Imagine being labeled a future mass murderer and then having to go out in public.

I can relate to this mother’s words more than I will ever write about online. And for the record, I have Nick’s, and Karla’s for that matter, permission to write everything I say on this blog. But today I want to hide and protect them both, given the speculation about whether the Newtown killer was autistic. I truly hope that this boy does not become a victim of someone trying to prevent the next mass murder.

Autism does not cause murder

There has been speculation that the shooter in today’s horrific massacre in Connecticut was autistic. Whether he was or not, he committed a purely evil act, but that is NOT autism. Autistic people are already subject to discrimination, abuse, and marginalization. Connecting this crime with autism only makes it worse. Autistic people as a group are no more likely to commit a crime than anyone else, and they need not be feared.

From ASAN’s press release about the media reports:

“Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.”

“Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime.”

Read the whole thing here:

http://autisticadvocacy.org/2012/12/asan-statement-on-media-reports-regarding-newton-ct-shooting/