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.

Five more years…

Five more years. That’s the estimated time until I can get a one bedroom apartment through subsidized housing. It should also, hopefully, get Colin through a good chunk of his schooling and prepare him for living on his own.

Getting him to be independent has been a process, not a one shot deal. Since he’s autistic and delayed socially, I started teaching him in late elementary school by sending him across the street to buy a small amount of groceries on his own. Something that made him feel quite proud of himself. Of course back then he was using my debit card but it was a start. His high school teacher was speechless when she found that out. Apparently he was the first student, out of all she’d taught, who had grocery shopping as a skill. Now he has his own bank account and a pre-paid Visa. He can spend exactly what he put on there and no more. Giving him responsibility without the worry of overspending.

Our bills are split relatively even. I pay extra on the rent  and pay our insurance while Colin pays for our Virgin bill (phones and internet). We were doing our grocery shopping together until this month. I lent him my card to buy three items at the grocery store. He forgot my three items then went to Dollarama and spent $71. So separate grocery runs from now on.

Colin’s all excited about his new responsibility because that means he picks what he wants, namely canned ravioli and macaroni and cheese. I figure he’ll broaden his horizons food wise once he gets bored with processed junk. Tomorrow I’m going to teach him how to make real macaroni and cheese, starting with a roux. Tonight he’ll be learning how to prepare tofu. The sauce is in a bag but it’s a start.

I’d say it’s bitter-sweet to be preparing for him to move, but it’s not. We’re both ready for places of our own. Splitting expenses just makes the inevitable move a lot easier. I’m looking forward to visiting Colin, and his clutter, in his own place then going home to relax in mine.

The weird part for me will be living on my own. I moved from my parents’ house right into my fiance’s house then our marriage broke up and I lived with our two kids. Kait’s flown the coop and is doing amazing. Now it’s Colin’s turn. We just need to wait five more years.

p.s. For those who are concerned about Blackie. She is doing 100% better now. Gobbling up her wet food and running to greet people at the front door. I’ve put her euthanasia money into a savings account but I don’t think she’ll need it any time soon. Which is amazing considering it was only a week ago that I was dithering about getting her euthanized. The appointment had been scheduled for a week ago tomorrow at 3pm. I’m so glad I dithered and cancelled the appointment. She’s such a sweet kitty and she’d leave a huge hole in our hearts.

Autism in the news…

I’ve recently become aware of a website, Healthline News, which has printed several articles on autism. Which is good because they are the second largest health information site that’s aimed at regular people, not medical professionals. They have an audience of 60 million readers, which is almost twice as many people as there are Canadians. Their articles span a variety of issues, not just autism, but I’m focusing on their autism spectrum articles today.

One article that’s interesting is an article which looks at white matter in the brain in comparison with the severity of autism and ADHD. Another looks at both the employment rate of people with autism, which sucks by the way, and how autism is portrayed in main stream media, which is improving. They also have a list of phone apps that can help teach young children and can help busy parents stay on top of appointments and therapy sessions. I could have used several of those apps when Colin was little, that is if we actually had smart phones back then.

Searching their site brings up over nine hundred hits for autism so you’re sure to have a variety of articles to read and information to peruse when the kids are settled down and not interrupting you every 3.5 seconds. Plus there’s many other articles on a variety of topics, from sex to cooking to improving your memory.

So, if you’re looking for a free website, with more articles than you could read in a year, this site is for you. Enjoy!

My life as it is…

I woke up this morning to discover Jeremy had made me breakfast to eat in my room which is so not typical for them. And, even more surprising, they weren’t dropping hints for anything. Breakfast was edible too. Mega bonus!

I was going to head out to a group called “Bucket Lists and Life’s Adventures” but finished breakfast a bit too late and went for a bike ride with Jeremy instead. It was a beautiful day here in Ontario and absolutely incredible, colour wise…

autumn-leaves

So pretty!

“Can you hold my bike?” Jeremy asked when we got back to the front of the building. I nodded and held it steady while they ran inside.

“Only some jerk got mail,” Jeremy said with a laugh as they threw a letter into my bike basket. It was from the Ministry of Community and Social Services. Not to be confused with the Ministry of Magic.

I opened it as soon as we got inside our apartment and the words jumped out at me.

The Disability Adjudication Unit has reviewed your disability and found that you meet the program’s definition of disability.

In most ways this is good. I’ll have money to live off of, a drug card for my bucket of meds, and an discounted bus pass which will give me transportation through the region. But I have to admit that seeing the letter proclaiming I’m disabled was a shock. The word comes with a fair bit of baggage. I’m not sure my stuffed dragon and I can hold it all (it’s a very small dragon).

20161018_192318

Jeremy and I took a break after we got home then my Mom and I took a whole big load of stuff to our local Value Village (pronounced Value Vill-aghe with a slight nose tilt and a bad accent). I had five ficus trees on my balcony but the kittens kept climbing them so I now have two. Plus we got rid of my wicker rocking chair (I can rock well enough without it) and Jeremy’s too small elliptical. We suddenly have living room space!

Today was supposed to be my trip to downtown London, England to ride the London Eye and see Wicked with my ex boyfriend. I’d like to lie and say that the stuff I did today more than made up for the missed trip, but seriously? Today was supposed to be the highlight of what I thought would be an amazing trip and a ride through woods I’ve seen a hundred times and a run to a second hand store doesn’t compare. But, sigh, that was then… another lifetime ago… and this is now. And today was pretty damn good (and came with a delivery of breakfast).

I will not apologize for being me…

Pain is a powerful deterrent. The emotional pain of seeing every adult look over at me with patronizing expressions and knowing nods because, once again, I was doing something that was normal to me and odd to everyone else. The physical pain after school when my classmates ran after me or chased me down on bikes because I was an easy target since I stood out. The humiliation of being ostracized repeatedly because no one else wanted to be tarnished by my presence.

So I shrunk myself small and hid myself close in an attempt to fit… and was still seen as odd.

I married the first person to date me. Years of thinking no one would ever want to date someone as weird as me turned into worries that this would be my only chance at marriage and children. Which is so not a good base for a relationship. Then I had kids and worried that my weirdness would hold them back from making friends. If the parents thought I was too weird, would their children be allowed to come over? And I shrunk even more.

Then came work. I needed a job to raise the kids and needed not to stand out, so I put on the most normal mask I could make and tried to be quiet but productive. I tried my hardest and hid until I could no longer find myself. And I never really noticed. It took a year before I noticed I’d lost interest in reading. Me, who read a book a day for years. I spent a year and a half without writing. I’ve been known to write for 12 hours at a time and carried a notebook and pen with me.

I never noticed when my shrinking turned into apologizing for everything that I did oddly, until I was apologizing for my mere existence. For using the air the more normal people needed to breathe.

I never really noticed until I found myself standing on the ledge to my balcony pondering how long it would take to fall and how quickly the pain would stop. My mask broke then and it’s never going back on again.

I will not apologize for loving bright colours and glitter
I will not apologize for loving stuffed animals and butterflies and rainbows
I will not apologize for hand flapping
I will not apologize for squeeing when I’m happy
I will not apologize for singing (yes, even in the grocery store)
I will not apologize for caring
I will not apologize for my thoughts being a step off from expectations

If I continue to apologize for being born autistic in a neurotypical world what am I teaching my autistic offspring? I’ve told my kids for years that, as long as I pay my bills, it doesn’t matter how weird I act. It’s time for me to believe that. My life depends on me believing that.

hand drawn daisy

I drew this at the hospital. The perspective’s not the best but I also haven’t drawn anything in twenty-five years.

So I’m reconnecting with myself. Writing poetry, reading, scrapbooking, sketching, and editing my novel. I’m singing again. To Jeremy, to the cats, and most of all to me.

Tomorrow I have errands to run, appointments to attend, and a cake to decorate. Then Jeremy and I are joining my parents for a family camping trip. I’m going to be 100% myself, even in front of the rest of the family. It will be fabulous!

don't shrink yourself

 

Seventy-two hours…

Content Note: frank discussion of suicidal thoughts

It was a gorgeous day. I carefully packed my bag for group therapy. Water, notebook, phone, sparkly pen, tissues. I didn’t usually bring Chapstick but was reasonably sure I was going to get admitted to the hospital. It went into the bag as well. I should have gone to group the day before but I’d been crying for most of the night and was too exhausted when my alarm went off. Today I was determined to go.

The therapy class was more of a holding class until space was available in the main group. Most of my classmates had already moved up (I was due to move on Monday) and only three of us were left. Everyone else was new. And quiet. My group spilled out everything in the introduction. This group shared first names and ages, nothing else. The instructor tried to start up a group conversation only to have it fizzle. Then she tried again.

“Yes?” she asked. Why was she staring at me? And when had I raised my hand? What should I say?

“I’m thinking about suicide,” I replied.

Apparently that.

“Thinking or planning?”

“Planning”

“Not every suicidal thought is serious,” she pointed out. “Sometimes people think about suicide but have no intentions of following through. Is this something you intend to do?”

Jeremy had brought in my fairy garden the night before so I didn’t need to go onto my balcony. Several nights earlier I’d messaged a friend in tears and sat chatting with her on Facebook until Jeremy came home, terrified I’d jump. And I couldn’t stop thinking that it would be like flying… and then nothing. I couldn’t keep living like that and, while I wanted to die, I didn’t want to hurt anyone. Someone was going to be hurt finding me and it was going to happen sometime soon.

“Yes,” I said quietly. Every single person in the room was staring at me.

“I can’t hear you,” she said.

Seriously? Like this wasn’t hard enough already.

“Yes,” I said a bit louder and nodded for emphasis. She informed me I needed to see her at the end of class.

Class ended, she arranged for someone to cover her next appointment, then set off with me through the back halls of the hospital… right back to where Karen and I started a month and a half earlier. Thankfully this time the waiting room speaker had been disabled. Once again we went through triage and to the nurse’s station.

“She needs to be put on a form one,” the instructor said urgently.

Form one? Oh, she’d discussed this in class. That was a seventy two hour involuntary admission. As long as there was a bed somewhere relatively quiet I didn’t care. I’d only been up for three hours at that point but I was already exhausted.

I saw a doctor next. All I remember is him handing me paperwork explaining my involuntary admission and that the number 42 was on top.

42 ~ the meaning of life. There wasn’t anyone to share that bit of information with. Security was on the other side of the room, carefully keeping an eye on me. A volunteer saw me hugging myself and gave me a sheet. A security guard told me I could have another one if I was still cold and warned me I’d lose my phone soon and to copy down any numbers I needed. I knew Jeremy’s number, and my parents still have the same number from my childhood, but I didn’t know Karen’s number.

The psychiatrist called me into a room. It was bright and had plexiglass windows in the middle and a door. She sat down and gestured to the seat in front of her. Had anything happened recently?

A madman shot up a bar.

But that was half a continent away in a different country and would bring up too many questions.

“My boyfriend and I broke up at the beginning of May,” I said hesitantly. Hesitant because I’d answered these questions multiple times before and pretty much knew what to expect.

“Who instigated the break up?”

“It was mutual,” I replied quickly. It hadn’t been but I didn’t particularly want to get into blaming. “It wasn’t a good time for a relationship, there was lots going on.”

“Like what?” she asked, leaning forward.

Great.

“We’re both struggling with mental health issues and [boyfriend] has some physical health issues too.”

“And what else? You said lots.”

“[Boyfriend]’s just starting his transition,” I replied. Maybe she would know what transition meant.

“What does that mean?”

And maybe not.

“Gender transition,” I replied.

“Oh… he’s going from male to female?”

“Umm no. He’s…” [Boyfriend] wouldn’t want to be described as female in any way but I couldn’t think of a way to explain.

“So he was born female. Did you know this ahead of time?”

I nodded and was relieved when she didn’t appear shocked like the last professional. Although leaning back in her seat wasn’t much of an improvement.

If I fall in love with a woman, would that be seen as wrong?

The questions went back to suicide and the final question, “If we released you, would you feel safe?”

It would be like flying… and then nothing. I remembered curling up in my chair, hugging my stuffed animal, scared to even go near my balcony and shook my head.

“Okay, follow me,” she left the room and gestured to a security guard, the same one who’d offered me a second sheet earlier.

This time he gave me pants, complete with a hole in the front, and a three armed shirt. I knew what the hole was for though I’d never worn pants with one before. The shirt left me baffled.

“Here,” he said as he took back the shirt and mimed putting it on. It wrapped around so that one arm went through two holes. Then he took all my belongings and gave me a pair of blue throwaway slippers with a seam across the soles.

I spent most of my time in emergency sleeping, which I’m sure relieved the guards. Actually, I know it did because one commented on it as he relieved the other.

“Whew,” the second guard said. “It sounds like an easy shift.”

One guard gave me a heated blanket when I started shaking and talked with me about books. He told me about a new movie too but my thoughts were too scattered and I couldn’t remember the title. It sounded interesting through.

I stayed in the emergency room hallway until 8pm, missing both lunch and dinner, before being wheeled to the psychiatric ward. It’s a small ward with a P shaped hallway, a TV room with plastic chairs, and a cafeteria that doubles as an entertainment room. The blinds are tucked away behind a window pane so no one can hang themselves. The mirrors are silvered metal. And there’s no bag in the garbage can. Meals are served at 8am, noon, and 5pm with a plastic fork and spoon. Have you ever buttered cold toast with a spoon before? It’s, umm, interesting. And chewy. The toast, not the spoon.

I’d been terrified of going into the ward. I knew I needed the help but had no idea what to expect other than, well my mind drew a blank. Honestly, while I hated being locked in… unable to leave, the ward itself wasn’t bad. The nurses were uniformly kind and the patients were friendly and understood “sorry, I’m getting overwhelmed… I’m going to have to go lie down”. I made three friends immediately and we hung out together, playing cards, colouring in those intricate adult colouring books, and singing. I’d been told that people don’t like to remember being in the psychiatric hospital but the other patients showed no sign of that. Multiple times I heard people conversing and reminiscing about previous visits. Remember so and so from two visits ago? He’s here now. Oh hi doctor! I was your patient during my last admission.

One thing that I love about this hospital is that the ward is mixed gender. During my stay there was one very effeminate gay young man who was much happier and comfortable hanging around the women and one young person struggling with gender dysphoria who had no idea what their gender was. Considering they commented on hacking off their long hair to buzz cut length because they’d have died if they didn’t, I think being forced into a women’s only section and female garb would have been very detrimental. And, yes, I did assure them it’s normal to be unsure of your gender and that it can take years to sort out.

some won't come and that's okay

People say that you learn who your real friends are when you hit your lowest point and that is so true. One of my friends, who I trusted completely and was positive would always be there, walked away from me completely during this time. It was a heartbreak and one I’ve sobbed about more than once. However that friend’s abrupt departure was more than offset by the number of people who walked in. The friends sharing messages of hope and love. My fellow patients who repeatedly commented on my kindness and showed me kindness of their own. And the anonymous person who left a spray of daisies on my bed the day I left the hospital.

I have no idea about the future. Right now I’m considered emotionally fragile by the psychiatric team, too fragile for the group I was to attend. But I’m feeling better now than I have in years and am ready to take each day one step at a time.

coming home

Me leaving the hospital after a week’s stay with one of my anonymous flowers.