Our need to be heard as adults on the spectrum

Rewind about 25 years ago, it was the early 90’s (1991), the words Autism, ADHD, Sensory Processing Disorder etc were never heard.  If you couldn’t keep up with your school work you were “lazy”, if we acted out we were sent to the hall or the Principals office, if we shut down in class because we were overwhelmed with the noise we were said to be insubordinate and had to stay in at recess and lunch to do our work (which wasn’t always so bad). 

I remember it all like it was yesterday – the Aspie mind has a knack for holding on to info and storing it away to be recalled later.  I remember my constant need to arrange the inside of my desk – biggest books on the bottom all the way to the smallest on top – pencil box on one side and so on, pencils lined up on the ledge of the inside of the desk, ruler eraser etc.  If my desk was organized how I needed it I could function better and wouldn’t feel so anxious.

Sometimes by the end of the day my brain would be so fried I would put my head down on my desk and close my eyes and just try to decompress as best I could.  In grade 2 I was held back – the few friends I had made went on to the next grade without me and none of us were ever friends again even though we ended up in split classes throughout Elementary School.  It was hard on me – it was due to my Mathematical skills, my social skills and emotional age that I was held back.  I remember the day – last day of classes and the rest of the kids were gone and my teacher Miss. M calls me to the back to sit beside her desk.  It was sunny the lights were off in the class, the smell of popcorn we had eaten while watching a movie was still in the air.  I remember staring out the window and she talked to me and explained what was going to happen the next year.  I remember crying because it stung.

We didn’t have IEP’s, therapy, and unless you were handicapped mentally you didn’t get an aide either.  I carried that guilt around for a long time, like I was a failure. 

Now fast forward to today, IEP’s, 504 plans, terms like SPD, ADHD, ASD, Aspergers are common place in schools, there are things like early intervention and Autism Societies and even the internet (Facebook etc) where we can reach out and get support.  I had nowhere to turn when I was struggling – I would get so angry because I just didn’t want to be so different from those around me anymore.  I hated life for a long time.

I think it is important for us adults on the spectrum to be heard, to help pave a smoother road for those behind us, to show that there is no magic age that suddenly Autism/Aspergers ceases to be a thing.  It doesn’t just go away suddenly because the government and service providers think we shouldn’t need help anymore.  There are so few programs for those over 18 that the ones that exist can only handle so many people, leaving many many others without vital supports they need to transition to and maintain independence.

We need MORE help not just for the kids but the adults – with the surge in Autism diagnosis’ what happens when they all start to age out of services.  We can attest to how difficult it is without the right supports in place. how few places will hire a person on the spectrum, how hard it is to navigate the busy constantly changing world around us.  We cannot always have our parents there to fall back on, some just wont be able to keep on being the therapists and the parents and the financial and emotional support 24/7.  It is hard enough on a parent now – fighting for services for kids – imagine at 18 when suddenly there really isn’t anywhere to get support. 

For myself I was forced into “assimilation” so to speak – I was reprimanded for being different and I hid so much of it for so long that when my Dr. finally gave me the official dx I felt better but that still doesn’t make up for how hard it was growing up.  I was beat up, hair lit on fire, nose broken, fingers broken – the minute my “weird” showed it was game over.  I actually spent more time with the guys playing Hockey or Soccer it was easier to fit in with them than the girls – they didn’t judge as harshly.  But times are different and I know for myself and Kevin it’s a daily struggle and causes a lot of frustrations. 

We need a voice – we deserve to be heard to because we can attest to the daily struggles and difficulties that go on because there really isn’t anywhere to turn and even Access Mental Health here doesn’t offer much help only if one is feeling suicidal but really one should never have to get to that point just to get support. 

We have had a rougher road in so many ways – we need to help those behind us and have a voice so that those aging out now don’t have to go without decent supports just because they turned a certain age.  Autism doesn’t stop at a certain age why should getting support…

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