Susan's Blog

Wednesday, January 20, 2016

When Autism Campaigns Become Camp Pains

Any social movement ultimately opens up to new discourse, different points of view. Autism is no exception. We’ve had the anti-vaccine groups vs. the medical/pharmaceutical/scientific institutions. We’ve had identity-first vs. person-first debate. We’ve had the Autism Speaks Awareness campaigns vs. the ASAN (Autistic Self-Advocacy Network) nothing-about-us-without-us/acceptance, not awareness, campaigns. And I believe each stage in the modern history of autism (starting in 1981, when Lorna Wing discovered Hans Asperger’s work and came up with the term Autism Spectrum Disorder), is important and must be faced courageously and thoughtfully. Wing’s contribution ultimately broadened the diagnosis to include many many people who — Steven Silberman points out — were otherwise marginalized in institutions as psychotic or intellectually disabled or criminal; or marginalized as weird, odd, crazy, nerdy, unlovable.

As ugly as these rifts have become, each phase, is important in the progression of autism as an important social movement.

The current rift is a new iteration of the AS-Self-Advocates division. The rift began with AS (Autism Speaks) using stories of suffering on the part of autism families to raise mainstream awareness of what families need.  The tension came from the AS emphasis on Autism-As-Child-Kidnapper. The positive sides of autism were not a factor, the idea of autism as identity was not actually known. I believe that Autism Speaks acted in the best interests of the cause of putting autism on the map. No one — other than autistics themselves, autism families, a handful of researchers — was thinking about autism, period, before AS came along with its empty stroller ads or Autism Everyday video. I give AS the benefit of the doubt, considering the pervasive view then, the ends-justify-the-means battle mode.

Before long, self-advocates who could communicate protested this attitude, rightly so, because it is potentially damaging to autistic people. The AS-type of autism hatred was a direct attack on who the autistic self-advocates were. This makes sense: if you harp on extreme and negative conditions of a disorder, then all people will want to do is eradicate it like cancer. And for a small, damaged minority, this view may translate to justifying violence towards autistic people (never ever justified.) Or, much more likely, for well-intentioned but misguided parents, questionable or even harmful, unscientific “cures” or treatments, like the use of chelation (which killed one child), or giving a child bleach enemas, or the drug Lupron that staves off physical development in the child.

These are horrible approaches, unjustifiable. But let me ask a question, without condoning anything harmful to a child:  Might there indeed be something environmental harming our children? This is a question worth asking, and it is a thread that runs through the anti-vax, anti-autism groups. That, plus the GI connection to some autistic-like symptoms — these came in part from the anti-autism group. Formerly discredited, now many doctors urge looking at intestinal issues and physical causes for behavior problems. Furthermore, there are immune-compromised children who cannot be vaccinated but should not be ostracized for their decision.

The new issue is a further evolution, and the term “Inspiration Porn” sums it up. We now have autistics who can communicate decrying the parent bloggers who appropriate their autistic child’s life story and use it as a way to promote themselves, or to get sympathy from other parents and groups. I’ve read tweets that express outrage at the pain parents describe of dealing with autism. The mostly legitimate fears for the parents’ own children get translated to callous, clueless unjustified whining.

This is a bloody split, because it gets right to people’s hearts. If you have a child  — or an adult loved one with autism who cannot communicate, is self-injurious, acts out, destroys things, runs away — you may have a very difficult time even believing that the self-advocates understand your child’s — and your — struggles. And the name-calling, the put-down of “Inspiration Porn” doesn’t help. The challenging behaviors and episodes are very real. Yet they are not the whole picture of autism by any stretch. And yet again they may be a very large picture of some families’ lives. Mine included, at several points. No, we don’t want society thinking Autism = Violent People. But we do want help for those families who are living with it. Yes. We. Do. We just need to find balance in how we talk about it.

There are self-advocates, too, who explain much more fairly and accurately the harms of ableism, like this one. I’ve learned about ableism and the ways I’m likely guilty of it, from the self-advocates like this one and from ASAN. I’ve asked myself what I should do to change, if indeed I am guilty of Inspiration Porn myself. The ableists see everything through the Poor Autistic filter. They want to force the mainstream, the neuro-typical. They see autism as inferior to non-autism.  Hugely important for society to see this, the wrong of it, the harm, the psychological fascism involved.

And so: there are no definitive answers here. I understand all the sides. I have friends in all camps. I’ve also seen my Nat evolve and my own perceptions of him have radically changed over the years. I also believe that things are not clearly sides at all, that this is one big Spectrum spectrum. There are grays here. There is an entire rainbow of viewpoints. The non-negotiables, of course, is inflicting harm on others. Or using your child without considering his/her feelings about what you write. Or vicious attacks on honest, worthy, awareness-raising posts. Each part has for better or worse contributed to putting autism on the public’s radar. Each group can and should learn from the other.  Let’s hope that that radar remains focused on resources and accommodations and scientific research that helps autistics realize their potential, and helps families connect with — and help, yes, help — their differently-wired loved ones.  Only with balance, bona fide science, courageous open-mindedness, and compassion for all of us will we move forward, faction-free.


Fantastic and AMEN!

— added by Kate Movius on Wednesday, January 20, 2016 at 2:17 pm

“Each group can and should learn from the other.”…this is what it will take. You nailed it.

— added by Candy on Thursday, January 21, 2016 at 12:17 am

I am wading it…

To quote the first OT coordinator “the only thing a dx is for, is to get services”. I believe this 100%.

I have one that was mild non-verbal PDD at 2. He had casein protein ASD. At 16 he is in the Univ stream. Yes, there are a few social issues but he IS NOT disabled. He IS NOT allowed to call himself “autistic”. He is “NORMAL” with quirks which we all have.

When he was dx’d (4th time) at 6 I was told I probably have Asperger’s. FWIW, I am not going to justify it, but just say “NO KIDDING”. BUT, I AM NOT DISABLED, THEREFORE I AM NOT AUTISTIC and I WILL NOT CLAIM TO BE.

My 14 year old has regressive ASD. Yes, he is 100% farther ahead than 99.99% of others with his dx. He’s litterally “one of a kind”. BUT, he requires supports to get through his day. Yes, he’s emotionally normal and per non-verbal testing not ID. He can out read most “normal” kids. He’s unbelievable on an iPad, his graphics and movies on his 3Ds and DSi are amazing. He loves theater (but not strings), he has perfect relative pitch and picked out 2 hands Auld Lang Syne on his keyboard New Yrs day (took all day off and on) BUT, outside of a secure area (home, classroom), the wall comes down and he literally walks through people, and what little speech he has… vanishes. He can never live on his own.

That’s why I have no use for the ADULT autistics that live on their own, have families, are dx’d at 40 and then claim they know what it’s like for someone who is truly disabled.

My son wishes to go to College, get married and live on his own… they want to ignore him, tell me that I can’t “cure” him, and he needs to “get over it and embrace his disability”.

That’s where I stand… with my son. “The only reason to get a dx is to get services”….

— added by farmwifetwo on Thursday, January 21, 2016 at 10:57 am

I’ve been thinking about this subject a lot lately, if the gap between the self-advocates who insist they are different, not disabled, and the NT family members who find themselves dealing with what they see as the disabling (not different) aspects, will ever be bridged.

It seems to me that some of the things that make a person autistic also make them unable to see exactly what is disabling about their make-up. Yes, some of those aspects are disabling because we as society throw up unnecessary road blocks. But even if all those roadblocks were removed (and of course we should), there would still be the disabling parts

I started this long brooding session after someone sent me a link to a public radio interview with the mother of two boys on the spectrum (IIRC, the show was called Sex, death and money). Even as I agreed with everything she said, even as I was thinking, ME TOO!, I was also thinking how offensive a self-advocate would find just about everything the mom said.

— added by Ohio Mom on Thursday, January 21, 2016 at 11:55 am

P.S. just goggled it, the episode was “Autism wasn’t what I signed up for,” on Death, Sex and Money.

— added by Ohio Mom on Thursday, January 21, 2016 at 11:59 am

He is 18years old nomverbal. As a child he also seemed to have adhd. Lots of running around stimming,throwing toothbrushes out the window, lots of shaking wires, lots of weird noises (happy noises like “digadee” or frustrated noises like “attetina” (pay attention?). I was devastated when he was diagnosed. What? He will never talk? How does that happen. Poor baby poor me. But guess what he is the best sweetest young man anyone could ever meet. I feel bad that he will never drive a car or get married or even have a conversation. But, no need to feel sorry. He is happy
He loves school
He loves special Olympics, he loves camp and all the outings at school especially grocery shopping. The school is training him for life skills and they have him working in the cafeteria.
He loves vacations and snorkeling and music
He likes his life. He is still obsessed with the computer and cell phone (although if you call him he rejects your call,). He is a great help around the house
He does yard work and unloads the car after grocery shopping. When people come to the house he sits with them and listens. He never wanders off. At the movies he goes to the restroom and gets refills of popcorn by himself and finds his way back to us. He looks things up on the computer by typing what he wants to learn about
We are lucky to have such a likeable friend
What worries me is when he I 22 there will be no more school
He will need help finding a job and a place to live
We want him to be as independent as possible and continue to be happy.
So this is a testimony of a disability and autism gone good.

— added by Joan on Sunday, January 31, 2016 at 2:00 am

Parents with aggressive ASD kids and those with non-aggressive ASD kids live in 2 totally different worlds. Their views of ASD are completely different. Just as people being on different ends of the spectrum are so totally different. The aggression/violence changes EVERYTHING. Until people have lived with the constant stress and abuse inflicted by an aggressive ASD Individual, please reserve your judgement of others. The pain and emotional turmoil is something you cannot imagine because you haven’t lived it. I suffer from PTSD because of my son’s autistic aggression/violent behavior. I did my best and it broke me down. Admitting that I couldn’t control him was the hardest thing I’ve ever been through. To fear your own child is something no parent or family member should ever have to endure. But they do every day. Advocates need to try to understand and empathize because when you have been through excruciating trauma day after day, as so many parents, siblings, and caregivers of ASD Individual’s have, people want to tell their story because it helps them deal with the pain of PTSD. It was too much for me. I’m not afraid to admit it. Go ahead and condemn me if you want, call me a bad mother or whatever, autism has beat me down so much I’m numb now. That’s a small piece of what PTSD will do to you. I call it a gift, when you can’t take the pain any longer, PTSD will numb you out so you can carry on living even if you are dead inside. Will my son ever recover from autism? Not likely, but it could happen. Will I ever recover from PTSD? Not likely, I barely even remember the woman I was before autism. Do I blame my son for my PTSD? Hell no! He can’t help it. I blame autism. But that doesn’t mean that your autistic child is or will ever be aggressive and violent. No. It doesn’t. But mine is. Do advocates, other parents of ASD children, and ASD adults themselves want me to live in denial about my son’s autistic aggression and violence just so it is not a reflection on you or your child? That is selfish and unreasonable. I can understand some people’s point of view, but like it or not, when aggression and violence enters the picture we are ALL victims of autism, not just the Individual, but the family, friends, and the community as well. And we all need help to cope. Sorry but that means being truthful about autism and what CAN BE a very traumatizing experience, with no one being to blame,and no answers.

— added by Win on Friday, February 19, 2016 at 3:48 pm

If he has the the type of autism that is agggressive something must be done for his sake and yours. Get help make a million phone calls. Find a place for him. You are not being a bad mother. You are a good mother. You can still be in his life. Good luck go both of you.

— added by Joan on Friday, July 15, 2016 at 8:40 am

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