Welcome to the discussion

I finally prepared and sent my response to CAHS, the PM, and the Min of Health. Here it is:

"Sorry to be so late with my response, I intended to send it when you collected other feedback. But I was so upset I deleted my response twice and had to start again.

I was extremely disappointed to read your assessment "Autism in Canada: Considerations for future public policy development - weaving together evidence and lived experience." I couldn't find anything that would lead to "concrete policy change" for Autistic seniors or even Autistic adults over the age of twenty-five. I saw absolutely nothing related to "how to better serve and support Autistic Canadians and their families" if those Autistic Canadians are older and/or without family. To me you did not fulfill your mandate. Not only was I not validated, your assessment seems to question my existence. I was initially very excited when the assessment came out, posting it on the peiautisticadults.com website 'Here it is: Release of the Assessment ...' I was expecting some innovative approaches for the care and support of Autistic seniors including the promotion of peer support popular and utilized in other countries. Instead, I'm devastated to discover there's nothing here that will have any positive impact on me or other seniors in our lifetime. Autistic people are members of their families and frequently more than one member of a family is Autistic - diagnosed or not. Huge numbers of Autistic people are not diagnosed, particularly women, people of colour, and other groups as you mention. Some say only 1 in 5 Autistic females will be diagnosed by age 18. Additionally Autistic children with multiple co-occurring conditions are much more likely to get a diagnosis of Autism than an Autistic child without co-occurring conditions. All to say when you talk about percentages of Autistic people, what you're really talking about is percentages of diagnosed people which is currently heavily weighted towards white males with multiple co-occurring conditions. Meanwhile, the less disruptive children/people are ignored, masking as best they can so as to not upset the non-Autistic people. So when you say 50% of Autistic people are on social assistance, for example, I think that stat is misleading and negative towards Autistic people. You have no idea how many Autistic adults support themselves or how many Autistic Seniors worked all their lives. Same with "the average yearly healthcare costs for Autistic children was two to three times greater than the healthcare costs for non-Autistic children" Since there is no medical treatment for Autism you must be talking about other co-occurring conditions and yet you claim those are costs associated with Autism.

You mention the cost of Autistic people in other sections as well without mentioning our contribution. Significant percentage of Autistic people work and pay taxes and yet there are no programs or services specifically for Autistic adults and frequently Autistic people are unable to access the programs and services set up for the general population for which their taxes have contributed. In those situations tax paying Autistic people are at a loss compared to non-Autistic people, yet they get lumped in with 'the cost of Autism'. The cost of Autism should not include the cost of co-occurring conditions that are NOT Autism and should also not include the scams that non Autistic people convince Autistic parents they need for their children. I read a quote today from an Autistic person on Twitter "We're such a money cow for so many people and yet most of us live in complete poverty". Expensive programs to manipulate Autistic children to make them more acceptable to non-Autistic people (aka conversion therapy) are not the cost of Autism, that's the costs of non-acceptance. The assessment repeatedly refers to Autistic people living with their families for their entire life. There's an obvious problem with this - at my age of 68 my parents are deceased and have been for some time. My brothers are also deceased. Where does that leave me? How does your scenario work when the parents are Autistic too? Who supports the Autistic parents or are they being cared for by the Autistic grandparents? You even say "with parental engagement as the greatest predictor of a ‘successful’ transition" in a section listing retirement as one of those transitions. Most parents will not be available to assist their Autistic children when those Autistic children retire.

Other countries recognize Autism as a lifelong condition and also recognize the increase in diagnosis "stems from a growing awareness of Autism and changes to the condition’s diagnostic criteria." You briefly acknowledge " a “lost generation” of Autistic adults who may not yet be diagnosed" and yet offer nothing to find/rescue those lost adults. The summary following this section doesn't even mention adults. Other countries recognize "long-term severe negative consequences affecting mental health, self-perception and access to support" as a result of living your life without a diagnosis and/or acknowledgement. Imagine how that impacts Autistic Seniors. Yet nowhere in your assessment is there even the slightest compassionate response to the plight of the thousands of those 'lost' Autistic adults. Your response to this obviously time sensitive situation is someone should do some research. How many years from a request for research to implemented programs of support? 10? 20? Not to mention researchers recognize those Autistic people as having a unique experience meaning the research won't apply to any other group. I am frankly shocked at your lack of compassion, empathy and concern for this significant segment of the population.

Although you apparently collected thousands of submissions from Autistic adults I'm not sure what you did with them. It seems you paid much more attention to the presumed non-Autistic parents and caregivers and very little to the submissions of Autistic adults and seniors. If you communicated with any Autistic seniors - you didn't notify me about the zoom meeting for Autistic Seniors until days after it occurred, and I was the only senior at the zoom meetings I did attend. Did you make any effort to talk to Autistic Seniors? Your committees should have been mainly Autistic individuals. Non Autistic people simply do not have compassion and empathy for Autistic people and judge them negatively within seconds of contact. Every Autistic person I spoke with who participated is disappointed that their voice was not heard or acknowledged. You need to research double empathy.

I just hope you will be clear to the Federal Government that this assessment is not on "Autism in Canada" but on a subset of Autistic people with the same comorbid conditions who live with their parents. Don't feel you need to respond. Please consider any questions rhetorical. I just had to get this off my chest. I'm hoping that by expressing my disappointment and feeling of betrayal I'll be able to put this behind me and get over the depression I've felt since reviewing your assessment.

Some information I used is linked below:

https://www.spectrumnews.org/features/deep-dive/growing-old-with-autism/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870038/ https://www.cbc.ca/news/health/autism-seniors-1.4607219 https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00277-1/fulltext https://www.scientificamerican.com/article/the-real-reasons-autism-rates-are-up-in-the-u-s/ https://thinkingautismguide.com/2018/08/are-co-occurring-conditions-part-of.html https://link.springer.com/article/10.1007/s10803-018-3521-1 https://thepointer.com/article/2022-06-18/aba-inside-the-controversy-surrounding-the-most-popular-therapy-on-autistic-children-in-ontario https://scholar.google.ca/scholar?hl=en&as_sdt=0%2C5&q=autism+aba+ptsd&btnG=#d=gs_qabs&t=1655768701232&u=%23p%3DT-j8n_tGyxcJ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7433648/

Sincerely,

True Taylor"