Autism Speaks does not speak for me…

In just under three more weeks, Facebook will be awash with blue. Blue banners, blue puzzle pieces, blue lights; all with a message imploring people to think about autism. This campaign has been co-opted by Autism Speaks, an organization dedicated to curing autism.

They see autism as a separate entity, something that clings to their children, slowly destroying them. They see it as something evil, something hellbent on destruction. And they make this obvious in their videos.

The first Autism Awareness month was held in April 1970, the year I was born. Back then autism was seen as something severe that primarily affected boys. Which is why I, as a chatty, albeit socially awkward child, was given the diagnosis of being a square peg instead of receiving one of autism.

It wasn’t until the early 90’s that people started paying more attention to children who weren’t severe enough for the autism label yet were still showing enough symptoms to not be considered average. These children fell under the category of Asperger syndrome (or Asperger’s). This disorder had been recognized by Dr. Hans Asperger back in 1944, the year my Dad was born, but didn’t gain much notice until 1981. It subsequently disappeared in 2013, when aspies got moved under the term “high functioning autism”, a term that is hotly disputed in the autism community.

Colin was born in 1997, six years after Asperger’s was recognized in Canada and the States. Autism was first mentioned briefly by his speech therapist when he was three and his Junior Kindergarten teacher when he was four. Both times I adamantly disagreed. I knew almost nothing about autism and none of it was good. As far as I knew, autism was children who banged their heads on the floor, rocked violently, screamed, and bit and clawed at themselves and others.

Colin was seven years old and in a special education class when my sister mentioned she thought he had autism. She was the third person and by then I had decent high speed internet and a need to find an answer. That was when I discovered autism checklists. I found so many of Colin’s unique quirks in those checklists, enough to make me realize those three people were likely right. Plus more than enough information to realize that my limited knowledge of autism was just that, limited to the most severely affected people. It took over a decade for me to realize I’m on the autism spectrum as well and I didn’t get officially diagnosed until last year.

Both Colin and I are highly verbal and have our own gifts. I’m good at writing and singing while Colin is good with electronics. He installed three ceiling lights in our home after watching his grandfather install one. He’s built and rebuilt several computers. He also has repaired speakers and RC cars. Basically we’re the people who Autism Speaks ignores.

Autism Speaks plays on the fears of parents. They act like autism is some outside, malevolent force out to destroy not only children but their parents’ whole lives. Something to be cured at all costs, even with “voodoun, prayer, and herbs”. Or, as Colin put it, “They make it sound like autism is a big bad meanie. It’s not, it’s just a birth defect.”

Many autistic people see autism as a neurological condition, hardwired into our brains before birth. It’s just as much a part of us as the colour of our eyes or the pigment of our skin. It’s entwined in everything we say and do. For every negative that can be said about autism, there’s a positive. Many autistic people have a special interest, in which they can rival PhD’s for knowledge. We can focus intently on minute details, often noticing things that neurotypicals miss. We are very routine oriented, which is good in many work environments. We are often very empathetic, which is a double edged sword because we can be overwhelmed by empathy to the point where we freeze and people then assume we don’t have empathy at all. Autism Speaks ignores all of this.

Autism Speaks in fact, ignores most people with autism, leaving us voiceless in their cause. Instead they focus on the parents of young children. Parents who are scared and vulnerable. This is a business and the parents are their clients. Autism Speaks CEO made $371,000 in 2013 (the most recent number I could find) and they spent over $52 million dollars in advertising. No wonder they speak so negatively about autism, they need scared parents who will do anything to cure their child. Scared parents with open wallets.

This year, instead of lighting it up blue, paint your page red or #toneitdowntaupe. Look towards ASAN the Autistic Self Advocacy Network instead of Autism Speaks. ASAN is run for, and by, autistic people.

Remember, Autism Speaks, but you don’t have to listen.

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Employable Me…

Are any of you neurodiverse and looking for a job in the United States? Do you have skills that are overlooked by the workforce? If so, I might have an opportunity for you.

Optomen Productions, a company that produces such shows as Food Network, Travel Channel, Nat Geo Wild, Animal Planet, Investigation Discovery and Bravo is making a new program called Employable Me. They want to find people on the autism spectrum or with Tourettes and help them uncover hidden talents that will land them jobs. They have a preview here, sadly it doesn’t work in Canada but hopefully it will work for you.

If this opportunity interests you, you can contact Liz Alderman at Liz.Alderman@OptomenUSA.com.

Good luck! If you do get accepted, please feel free to message me. I’d love to know.

School trepidation…

Gatineau*

The first time I heard that name was with Emma. She’d been dealing with several issues; bullying, anxiety, and an overwhelming conviction that she’d made her Dad disappear and he was never coming back. I asked the school’s social worker for help and was assured that Emma and I talked well so we didn’t need any outside help. This was flattering but not useful. I requested an assessment from the school psychologist and asked for more help. Gatineau was recommended and an assessment was scheduled immediately.

A stern looking older man met us outside their interview room. Emma immediately froze. He stared at her then barked, “She’s obviously depressed.”

“She’s very shy,” I replied as we edged past him into the room. “She’s always been scared of men. Besides, she was laughing and joking around just a minute ago.”

I looked back to see him glaring at me. “I’m the psychiatrist and I know depression when I see it. She’s depressed.”

His tone said he felt that was clearly the end of the discussion. I figured it wasn’t worth starting off with an argument, not when I was there to get Emma help so shut my mouth.

The room was filled with a huge circle of chairs and a fish tank, which looked oddly out of place. We all sat near the door, the fishes swam alone on the other side of a vast expanse of chairs. There was a man who sat across from us with a pad and pen, obviously ready to take notes. He didn’t make Emma any more comfortable although, to be fair, she could hardly get any less comfortable.

Then I thought of something else. “Before we begin, I should let you know I’m having Emma tested for Aspergers.”

The psychiatrist looked over at Emma then shook his head. “She definitely does not have that,” he replied haughtily.

I began to wonder if it was possible to pull a doctorate of psychiatry out of a cereal box. The psychologist had me fill out checklists that started almost from conception and sat with Emma for hours. Meanwhile this doctor had diagnosed her in under two minutes without speaking to either of us or even attaining eye contact with her.

The doctor settled on play therapy for Emma along with a parenting group for me. I wanted Emma to get social skills help and was assured that would come as long as I joined their parenting group. I agreed and we were placed into art and group therapy at the same time. The only caveat was I needed to miss the first three sessions as my parents were away and I needed them to watch Jeremy. I was assured that was fine.

I knew immediately the group was a poor fit. Emma was prone to slamming her bedroom door while yelling, “I hate you! You’re mean!” Meanwhile the rest of the group were dealing with youths who set fire to the living room, robbed stores, and smashed furniture.

The weeks went on. Emma enjoyed her therapy, coming home regularly with crafts, while I listened to the other parents and offered any support I could. One day our group mediator was late and conversation immediately moved to the psychiatrist.

No one in the group liked him. They disliked his attitude and distrusted his diagnoses. I commented that Emma was diagnosed with Aspergers** but hadn’t got any of the social skills help I’d been promised. The mediator stepped into the room to tell me I was wrong, their psychiatrist had ruled out that diagnosis, and my diagnosis couldn’t count because Aspergers was only diagnosed by a psychiatrist. I pointed out that he made that diagnosis in less than two minutes, without speaking to Emma; meanwhile the psychologist spent hours with her. He retaliated, saying their art therapist had also spent hours talking to Emma and agreed with the psychiatrist. I pointed out that their art therapist wasn’t a psychiatrist either, so if I couldn’t go by a psychologist’s thorough assessment, he couldn’t use six hours of art therapy for a diagnosis either. But she was well respected and spent many hours with children… and so was the psychologist. The mediator told me they’d never agreed to any further help for Emma and certainly not with social skills; they didn’t even offer it.

Didn’t even offer it. What the hell was I doing there then? I sat through the rest of the session feeling numb then talked to Emma about her sessions. I’d thought the therapist was letting Emma discuss her feelings about her father and school. Instead she’d been spending therapy listening to why her art therapist felt she didn’t have Aspergers. I pulled us out of Gatineau.

I got a withdrawal letter a month later, claiming I’d missed almost half the group sessions and had been a reluctant participant. I looked at the dates and realized he’d not only counted the initial classes but a full month of sessions after we’d left. I vowed I’d never go back to the agency.

And then came the chance for a new class for Jeremy. A smaller class setting, an LGBTQ friendly school, a program that offered a chance to earn school credits, and it was brand new and barely had any students. Jeremy could get in almost immediately. But the class was run by Gatineau.

Yeah.

I stammered that I’d been there a few years ago and had not been impressed with the service, only to be reassured that they had almost all new staff and no longer had that psychiatrist.

We had our intake assessment. The new psychiatrist was cheerful and engaging, while Jeremy was in amazing spirits and responded quite animatedly. I was told a second appointment would be set up “next week” between us, Gatineau, and someone from Jeremy’s school; probably zir teacher.

There was a message from Gatineau today, wanting to arrange Jeremy’s counselling sessions. I called them back and was told they could only offer an appointment mid-day, which means Jeremy is going to miss a full day of school every week on top of what zie’s already missing due to anxiety. Then I asked about the class.

“Oh, umm, yes. Well, that class is full right now so Jeremy’s been placed on a waiting list. We’ll let you know when he gets to the top.”

“I’ll have to call [school board member] and try to get Jeremy into a different class then. Zie needs to get out of zir current class immediately.”

“Oh! Oh!!!” She sounded shocked and a bit worried. “I’ll have to talk to J and see what she says. I’ll let you know next week where Jeremy is on the list and if we know how long it will take for him to get to the top.”

So yet more waiting. Waiting for Gatineau and waiting for the school board member to call me back.

There’s a meeting on Thursday between the school board and PFLAG to address how the board can improve how they work with LGBTQ families. I figure we’ll have quite a lot to discuss.

* Gatineau is not the real name of the agency
** Emma was diagnosed with Aspergers through the school board. However it is not a diagnosis she agrees with and she’s subsequently been diagnosed with Borderline Personality Disorder and depression. I’ve also since discovered that Aspergers and anxiety have a lot of similar symptoms.