Autism Statistics

Not good news

I began to gather statistics regarding autism a while ago. Sources and quotes seemed to vary widely but soon I realized that until quite recently there have only been a few studies regarding autistic struggles, and that most of the statistics quoted before 2015 or so were more likely to be using old information and only pertaining to young people or children. Statistics quoted here are still canted toward younger populations. Many autistic adults never reach the age of 60.

I have multiple sources for all the statistics quoted here, and when there have been drastic differences in the numbers reported, I have attempted to understand why and attempted to figure out which was most correct.

I have attempted to find actual studies instead of just quoting somebody else’s quotes from a lecture, blog, presentation, book, or article in print.
I believe that due to the hidden factor of the lost generation of older adults without diagnosis, the statistics are still probably skewed.

As our understanding of autism grows, so will the precision behind collected statistics.

Consider this at best, an “educated guess” using information available on the internet and in multiple recent reference books.
Reports and study results are accruing, these numbers are definitely not static.

Considering that these statistics are probably under reported, they are staggering in the implications. Something to think about. What can we do to lessen the impact of autism on those who must live with it?

It is perhaps easy for those of us ( autistic folk) who live independent lives close to the mainstream, who speak and write easily, who have a support system and access to accommodations to say , ” I do not have a disability, I simply have a different operating system”. Lucky us! We are in the very small minority of autistic folk so “gifted”.

These statistics give the lie to those who trumpet autism as a gift and who would become angry over people who search to find ways to alleviate the suffering and dangers that their dis-similarly
“gifted” autistic brothers and sisters deal with every day.

Consider these statistics:

Autism as it is understood today will affect between one and two people out of a hundred. –

35 percent of those with autism will have intellectual impairment

40 percent of those with autism have epilepsy or other forms of seizures

The average age of death for an autistic person without intellectual impairment is 54 years. Leading cause of death is heart disease, followed by suicide and seizures.
Suicide risk is 9 times that of the neuro-typical population, and risk of suicide is higher among women.

The average age of death of those with intellectual impairment is 39.5 years .

Factors in these terrible statistics seem to be worse overall health and likely complications of co- morbid health issues, poorer health care and poor self reporting of health issues due to impaired communication abilities. Higher incidence of seizures also is reported to be a contributing factor.

Children with autism are 40 times as likely as their neurotypical peers to die of injury before their 7th birthday. Most common deaths in this autistic age group are drowning, and suffocation.

Up to 40 percent of autistic people are non verbal, another 20 percent struggle with speech. This means + /- 60 percent of autistic folk have very strong impairments in every day ability to speak.

Add this to the wakening awareness that there is a high percentage of autistic people in jail. 30 percent of jail populations are reported to have intellectual disabilities.

( this covers all forms of intellectual disabilities, not just those who might be autistic) There is a very recent movement to try to uncover hidden autism in incarcerated populations. I applaud this work and hope to learn more as information becomes available.

I will sum this information up by saying that I believe the statistics being gathered today will be more accurate and those of tomorrow, hopefully even more so.

The reporting of statistics for the group designated “autistic” is in its infancy.

I feel it is important to our understanding of autism to see clearly how it effects us as a group.

To know these statistics, to know the impact of autism on so many individuals, is the first step to begin to take action to help in the places it is needed the most.

Assumed incompetence

patronized in a whole new way …

Now to report on something that has changed in my life experience. For several years now, with my graying hair and evident age I have been “patted on the head” metaphorically, being called “honey”, “sweetie”, “dear” and other endearments by complete strangers, usually younger women. It makes me want to bite somebody, just to show I am maybe not such a “sweetie” after all. Of course there is a world of thoughts and ideas, fantasies and speculation, and another world that often doesn’t intersect in what one would actually do. Fantasy can be a comfort some time. I have adjusted to the endearments and tend to simply ignore them. It is just proof that they don’t know me very well… right? Are they attempting to show good will and friendliness? hmmmm.

But I have noticed something new since I have discovered I am autistic. I am open about my autism and make light off and on of some of my struggles. I have this blog, which I share with the public in hope of helping others who are not yet diagnosed to find the peace of understanding themselves and others in knowing how autism affected them in youth and in their daily living. I willingly answer any questions I get from others when they learn I am autistic. One way to overcome stigma is to educate others.
On learning I am autistic, there are some folks who seem to immediately assume I am therefore incompetent to make decisions, to perform certain functions, to have any sort of judgement or understanding of things in this world which I have long been familiar with.

I am so old that my high school class just celebrated its 50th anniversary of graduation. There have been reunions before, and I have not participated.
Most of my memories of high school are of being mocked, bullied, socially isolated, and other non- successful social interactions.
I really had no desire to revisit those memories or to interact with those individuals who inflicted them.
When the announcement was made of the 50th anniversary celebration, there was also a form forwarded to fill out, asking class members to share what life has brought them in the past 50 years and to keep others informed.
I had filled out these forms before for the 10th, 25th anniversary etc. .
This time instead of the usual progress report, I asked that the link to my blog be included.
The reaction was interesting. ” Oh my what a blog, how brave of you to share your struggles, I am so proud of you.” This from somebody who I never had any interactions with at school and have no personal relationship with at all!
Then the question, not once but twice. “are you sure you want to do this?”
Implied was the idea that I would be ashamed to share this information about my autism with my former classmates, or that somehow I would damage myself or my personal image among my peers. It would be made public! Oh NO!
Yes, I assured them that I did indeed intend for my public blog to be publicly shared with all of the persons on the classmates list. I want as many people to be aware of un-diagnosed autism in the older generations as possible. I see this as an opportunity to share the benefits of diagnosis. Knowing I am autistic has been healing in a way that no other event of my life has come close to.

I am getting metaphorical and verbal ” pats on the head” and “aren’t you special” treatment now from others I am interacting with. I tend to just leave these comments alone, too, and attribute their reactions simply to attempts to be kind and to their ignorance of autism in general.

It is interesting that even though I was a social pariah in many ways before I learned I am autistic, I was not automatically treated as though I was also incompetent in general. This assumption of stupidity or lack of judgement does not sit well with me, it is a new experience and tends to make me feel crabby when it happens. So far I see it as well meaning ignorance. Perhaps that is better than the active hostility and aggression I experienced throughout most of my life.

The label of being autistic seems to have changed people’s perceptions and added an automatic layer of disdain or contempt for my ability to think. Yes, stigma!

Just shows there is need for not only autism awareness and education as to what autism actually ‘is’ in its many forms, but also need for acceptance. Hoping to open and win minds one person at a time.
Tomorrow I will be asking my GP for a referral to another autism specialist. Anxiety building. Subject /topic for a new blog page soon.