It is Autism Awareness Day around the world… kicking off International Autism Awareness Month.
I wasn’t aware of my autism until I was aware of my son’s.
And even then, it wasn’t me who was aware of it. It all started at the “info sessions” parents have to go to before their children can be put on the assessment list at the Child Development Centre here in Calgary. There were three sessions wherein the facilitators were going over what autism actually looks like … to sort of pre-weed out parents who’s children might have hearing loss or speech delays.
we had already been through the hearing tests. three times, in fact.
and i knew it wasn’t *just* a speech delay because speech and language development was the majority of what i learned in the psych part of my degree. developmental psych, specifically speech and language development.
so i set out to get comfortable for what was my first of three three hour infosessions. i opened my little binder, got my pens and highlighters ready. made sure it was all lined up and organized again. looked at my phone. got a new piece of gum. sat and figetted and waited while the facilitators went around the room to make sure everyone’s name was on the list. and when they got to me, it started …
you are in the wrong room i think.
i said no, my name should be on the list. Jenn Thompson.
yes, your name is on the list but i think you’re meant to be down the hall for families who already have a diagnosis.
i said no, my son it’s diagnosed yet, that’s why i am here. they said they won’t even look at him until we jump through this hoop so i am here.
but you are diagnosed? she says to me.
i said what?
she said, but you are on the spectrum, no?
i said what?
you are on the spectrum? so you should be at the sessions for people who already have diagnosed family members.
i said, no. i have OCD and social anxiety. i am not autistic.
and she replied, well maybe you haven’t been diagnosed yet, but you clearly are on the spectrum. and checked her box and went on her way.
and the sessions began and i left that place with my mind reeling. WHY WOULD SHE SAY THAT!
but the process was started for Hunter.
lost under the weight of Hunter’s autism diagnosis. which didn’t take long. they set aside three 2 hour appointments and used one of them. they observe through a mirror for some and then come in the room for some. upon entering the room, the first words out of the diagnositcian’s mouth was “wow, it’s really profound with this one hey.” and rather than sadness, i was relieved because it WAS so profound. it really was. he was only 17 months at the time of diagnosis and it was SO blatantly obvious to EVERYONE that my son was, what they referred to as, severely impacted by classic autism. it was recommended that i seek a residential treatment facility for him. i was told he would never talk or be potty trained. i was told it would ruin the lives of myself and my daughter to have him at home.
i told them, then, that it would ruin my family if i showed my daughter that what we do is throw away someone in our family because they are disabled. and never looked back.
i left the memory of the lady telling me i should be in the family sessions until it came time to negotiate Hunter’s service contract. i needed help. i felt overwhelmed at the thought of all these different levels of government employees coming into my home to tell me what my son needs/qualified for when i was so sure, early intervention is best, and they were trying to push us off. so i asked for help and had a contract negotiation held at Autism Calgary.
it went well, they basically agreed to everything i asked for and after the department reps left, I was left sitting with two AC reps – one the founder. and he said, you know you are so spectrumy. or something along those lines. and the female counterpart said, i was going to say that the whole time.
they recommended that i come for an adult diagnosis infosession. and i was like no no no, i have OCD and social anxiety. these are two labels i had basically just become comfortable with even though they didn’t SEEM to FEEL like they fit, after years of therapy and my counsellor saying it was her “best guess” between this interaction and my ASD dx, the same therapist would add CPTSD to my diagnoses.
they were hosting an infosession the following week and said they would make space for me, the doctor would LOVE to meet me they said. so i made time and i came.
this was now three people, heavily involved with autistics, who were telling me i am so obviously autistic.
i sat through the info and then there was a little … assessment on paper. if we wanted to have a diagnosis time with this doctor he first screened through this group wherein we had to fill out an autism assessment. when filled out, he gathered them all up and scored them and then told people if they would be able to book an appointment or not as he handed them back to us.
when he approached my table he held out my test and asked if he could shake my hand. so i shook his hand at the same time i asked, why? he said he had never seen someone score so high on this test and not be living in their parents basement. how are you coping, he asked. i replied, obviously not well because i don’t know what you mean? isn’t a high test score a good thing?
he laughed and said on this test it means you are VERY autistic. he would have to book a full appointment to go over everything with me but he wanted to do that right away.
within two weeks i was fully medically diagnosed with something i never knew i had. but that explained basically EVERYTHING.
literally EVERYTHING.
it wasn’t OCD. i have restrictive and repetitive behaviours, severe, a symptom of autism.
i wasn’t a picky eater, i have autism.
i wasn’t a difficult child, only wearing the same clothes and needing my tags cut out, i was a child struggling with sensory overwhelm and was fully unsupported.
i wasn’t a symantics arguer giving people a hard time, i am a literal thinker who hears what you say and takes you at your word, literally. as an autistic person this is super common.
i wasn’t “prone to tantrums” – i experience neurocrashes related to my disability.
as soon as i learned this information, my acceptance of myself … changed. things i had always been punished for and told were BAD … became obviously blatantly known to be symptoms of a disability i can neither control nor change.
tone and volume of voice … disability symptom. how many times i had my face slapped or was sent to my room for the wrong tone or blurting out things that aren’t “socially appropriate” … like slapping a child with epilepsy for seizing in front of you.
and once i found out about myself, it pointed to what i thought were answers for my daughter. so many similarities, but also we have so many clashes. and some people will tell you that if you’ve met one autistic, you’ve met one autistic. it turns out in her case it is actually only moderate autism, but SEVERE combined type ADHD that she struggles with. divergence runs deep here.
there are some, of course, who still want to label me as “bad” rather than see the reality that being diagnosed with autism shone on my life. just like there are some who like to think i cater to my youngest by providing him his safe foods daily. and you know what … those people … they don’t matter.
the world will always be full of naysayers. of haters. of liars looking for a moment of your energy. the world is full of Karens who will stare and point when a child with autism has a meltdown at a grocery store.
what actually matters is what we do with our lives.
what actually matters is that … my son does speak! prognosis is NOT always accurate and if i could speak to my previous self, my ten years ago self, i would tell me to not worry so much about all that shit they said because they don’t actually know. they are operating on decades old medical texts with decades old therapy examples and projecting what would become of us now based on all that old drivel.
what actually matters is that i found out! i did seek out a proper diagnosis. my daughter was properly diagnosed too. and what that means is that the “picture” of autism changes to include that symptoms as expressed/experienced by girls!! (another reason why i am against self-diagnosis)
what actually matters is that awareness is raised.
what actually matters is #AutismAcceptance
we need to put an end to shaming and blaming people with autism for experiencing symptoms of their disability.
we need to make supports accessible.
we need to make diagnosis accessible.
we need to make education accessible.
today is international autism awareness day.
i am aware every day. i am working toward inclusion and acceptance every day.
as the person with the disability, all the work shouldn’t be on us.
what are YOU doing, today and every day, to promote awareness and provide acceptance?