What happens to autistic people when we get old?

What happens to autistic people when we get old?

This morning I had the privilege of listening to several perspectives on aging at IMFAR 2014.  Three presentations covered distinctly different groups of autistic adults.  The findings were very different, and I found myself leaving the presentations with more questions than when I arrived.  Some say that’s a hallmark of good research, while others ask for their money back.  I just nodded, because they let me in free. 

Here's a bit of what I heard . . .

Dr. Joe Piven from the University of North Carolina looked at the quality of life for twenty autistic individuals over 50.  The guys in his study had traditional DSM III autism, meaning their issues are rather more debilitating many who are diagnosed today.  Most had verbal, functional, and intellectual challenges.  11 had no school; 9 had a high school education. Some lived independently; others were in some supported living environment.  They had a mean age of 56.

The first point he made is that we have no tools to survey this population.  The individuals themselves had limited ability to respond to surveys.  Most were in environments where their caregivers had not known them more than a few years.   Gathering detailed information was very difficult, and the study size was limited because finding the people was an even greater challenge.

The intellectually disabled have always been an invisible part of our society, and when you add autism and aging the situation only gets worse.  I should give all of us pause for thought.

17 of the 20 individuals studied appeared to be aged well beyond their years.  55-year olds looked 75.  Was that a result of autism, intellectual disability, or living situation?  The scientists don’t know, but several researchers who have worked with older adults with intellectual challenges say premature aging is common.

It was not possible to get good medical histories for all participants, but observations were made about their present state of health for everyone.  One of the things that struck the researchers was how common Parkinson-like tremors were.

Parkinson’s affects 1 in 1000 of the general population at age 60.  More than 30% of this group showed mild symptoms that might be attributable to Parkinson’s, and several were actually referred for medical examination.

Why would that be?  They don’t know.  It didn’t seem to be an artifact of serious intellectual disability, because the Parkinson’s-like rigidity and gait issues mostly showed up in the folks whose IQs were over 50.

Those troubling findings certainly merit further study.  I hope we hear more at our next meeting.

Hilde Geurts came from Amsterdam to describe a self-report exploration of quality of life in autistic adults on her side of the Atlantic.

Her sample included 486 autistic people, 19-79 years of age, whose average IQ was 114 – a very different group of autistic adults from those in the first study.  She asked respondents to rate various quality of life factors in their own words, and in some cases she asked friends or partners to rate the same things.

One of the first things she explored was the idea of “growing out of autism.”  That didn’t happen.  Her respondents said that autism symptoms decreased but did not disappear, as the respondents got older.  Almost all respondents said the challenges they faced as kids remained even when diminished.

When asked about satisfaction with relationships, living situation, work, and other things, autistics reported a consistently lower quality of life than the non-autistic controls.  Interestingly, when friends or partners observed and rate quality of life, those reports were consistently lower than the quality of life the autistic people themselves described.

I guess you could say we’re happier that observers judge us to be.  Maybe ignorance is bliss after all.

I’ve always thought my life got better as I got older, but she didn’t find an increase in reported happiness with age.  I was surprised at that.

Here’s an interesting finding:  autistic people reported more “cognitive fails” – like forgetting why you walked into the kitchen – that neurotypicals, but that didn’t get worse with age.  It's sure gotten worse for me!

Finally, we heard more from Dr. Lisa Croen of Kaiser Permanente in California.  She told us more about her adult study, which looked at 2,100 autistic adults age 18-60 who were enrolled in the Kaiser network between 2008-2012.  I wrote about her study in an earlier blog, but in this presentation she added some key data:
  • Almost 40% of the autistic population was treated for anxiety versus 17% in the general population.
  • The numbers for depression were a close second – just a couple percentage points less.
  • Almost 10% of the autistic population was also treated for schizophrenia or bipolar versus less than 2% for control population.
  • Suicide attempts were the most troubling – near 2%.  Can you believe almost one in 50 autistic adults attempted suicide at least once in that five year period?  That is shocking.
Epilepsy was much more common among autistic adults – affecting near 10% of the group.   Hearing impairment was twice as common.  Vision problems were three times more common.  Cardiovascular and metabolic issues were more common, but the differences were less dramatic.

Autoimmune disorders are a big deal with children on the spectrum.  Interestingly, they were not a big issue for adult males on the spectrum, but they remained a problem for women.

Surprisingly, the risk of cancer was about the same for autistic and neurotypicals – 3%

For every finding that I report, you can ask I, why?  In every case the answer is the same – we don’t know.  We can speculate that autistic people are less aware, or take less care of ourselves.  Maybe that’s some of it.  It's no surprise that a condition that leads to social isolation would also lead to anxiety and depression. We can offer up any number of other reasons.  But the fact is, it’s all speculation for now.

More study is needed.  If these studies show one thing clearly it is that adult autism needs to be studied in much greater depth, right now.  All of us are getting older, and we deserve some answers.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On.  He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.

Watch my TEDx talk on Organic Education for more thoughts . . . 


Laura C said…
Sobering statistics. It'll be important to know which part of the increased morbidity is due to genetics and which due to other factors which may be amenable to change - behavior of people on the spectrum and especially those not on the spectrum.
That Parkinson's thing is worrying. I recall hand tremors when my son was 3, and always tied it into his severe dysgraphia.

Thank you so much for what you do.
Kerri said…
I'm highly intetested in the Parkinson-like tremors too. My son seems to have these when he first wakes up. He's 8 and has had them since he was a baby.
Anonymous said…
Thank you for this Mr. Robinson. As a parent of a 10 year old autistic child, I need to know these things. It is rapidly becoming apparent to me that I need to put my future energies into doing something to help autistic people as they age. So much is spent on the young. I am glad that you posted the remark about growing out of autism. I think parents need to be realistic in their expectations, provide support, respect the individual, observe progress and make a plan that all are in agreement with as their autistic children age.
I'm wondering if all of the "tremors" reported problems were actually Parkinsons like, or could some have been "essential tremors" which I have. Mine are the leftover results of a phenomenon called "aura migraine". Not to be confused with a migraine that is preceded by an aura. An aura migraine is a migraine that happens in the lower left lobe of the brain usually but there is no migraine pain associated with it. Instead there are days and even months, which was my case, of various auras that present themselves until one day, without knowing it, the migraine happens. Again, no pain at all. All of a sudden your entire body mimics having had a stroke. Slurred speech, awkward gait, etc. Basically, for me, my entire left side was affected. E.R. docs said it was a "nervous attack". They thought I had a nervous breakdown because I exllained how for months before my speech was slurring and upon waking in the mornings I could actually move my hands and arms and SEE heavy aura lines around them, about five lefels of them. It took much research on my part, and two CT scans to finally ckme to the conclusion, backed by my doctor, that I had gone through an aura migraine. The first CT showed evidence of a larfe migraj e in the lower left lobe but that this spot COULD have been a stroke also. The 2nd CT scan, done a year later was done to see if spot was still there. If it was then it was stroke. If not then aura migraine, which Iis what Iit turned out to be. Just food for thought when considering Parkinsons and stroke tremors, or other tremors in general.
Sara said…
I also find the tremors factor interesting. Both my son and I are mildly on the spectrum and upon waking have tremors as we try to wake back up.... Almost as if we have trouble reconnecting our mind back to our body. As I've gotten older I also shake frequently and have always thought it was related to low blood sugar., but it has increased to the point that some family and co workers have pointed it out.
John Robison said…
Remember that the tremors were described as Parkinson-like. That does not mean the people actually had Parkinson's. It's a question that clearly needs to be explored.
norxgirl said…
Heidi said…
Thanks for this John. This information is much needed and you writing is stellar. Good combo.
The Grumpy Nerd said…
What happens? We die alone.
Anonymous said…
Never mind about depression, I much more worried about us Autistics getting Alzheimer's.
Anonymous said…
Have you even the slightest idea of how distressing I find it that you are still writing and having an audience that could be better absorbed by autistic authors who are not house niggers?

Those of us who have suffered the worst do not care what you think about the colour of the sky. Us Powells do not care what "parent of an autistic child" think, nor do we care what sell-outs think.
rachel_forness said…
What about Aspie's who also have Type 1 Diabetes, along with the other comorbidities such as Depression, Anxiety, SPD? My son is almost 14, and these are his diagnoses. I have not heard of others (at least in my network of friends) who also have Type 1 Diabetes
rachel_forness said…
This comment has been removed by the author.
There is growing awareness among OTs and PTs that a very, very high percentage of individuals with Autism have fine motor and gross motor delays. I have attended several presentations by Dr. Michael Weiss, PhD where he outlines the clinical similarities of the motor challenges of adults with Parkinson's and young adults with severe autism. The clinical similarities included overall stiffness/rigid muscle tone, slowness of movements, difficulty initiating movements, and poor rhythm and timing of movements. Many neuroscientists have documented significant cerebellar dysfunction in individuals with Autism, therefore the presence of disordered motor skills should be expected as the function of the cerebellum is to regulate all movement, regulate sensory processes, and coordinate motor, language and cognitive sequencing, planning, and timing. Some of you may find the following research study by Dr. Weiss and his colleagues interesting reading: Weiss, M. J., Moran, M. F., Parker, M. E., & Foley, J. T. (2013). Gait analysis of teenagers and young adults diagnosed with autism & severe verbal communication disorders. Frontiers in Integrative Neuroscience, doi: 10.3389.
Sincerely, Diane L Maxson, MHA, MS, OTR/L
Anonymous said…
Unknown said…
John - anxiety, depression, bipolar, suicide are comorbid with [living with] ASD; hearing, vision, epilepsy are usually genetic. GI appears to be comorbid with ASD, so autoimmune is not too surprising. Also autoimmune IS much more common in women.
Looks like ET is common in ASD community, but is definitely hereditary.
Bipolar is a common misdiagnosis of ASD.
On the other hand, diabetes, cancer, cardiovascular and metabolic issues are all likely associated with western lifestyle.
So the correlations look to me like genetic vs lifestyle, assuming the known comorbidities of ASD.
mary said…
So sad. If I had known 23 years ago what I know now I may not have reproduced. My poor DS. Both he and I are aging prematurely and I feel like we can't do anything about it. Plus his fraternal grandfather had Parkinson's, with his miserable luck he'll probably get it too.
Shaigon said…
I'm 25 yrs old and I've had type I diabetes since I was 6. I'm not sure when I officially began to suffer with Aspergers Syndrome("high-functioning autism") but I was diagnosed sometime when I was still a teenager. Also to fuel the fire I have severe germaphobic OCD and have had it for 5-6+ years now and it's gotten so much worse in the past few years, especially this year. It's super crippling and I now live on my parents bedroom floor and have to rely on my poor dad for everything. Anyway, the most relevant info I've read stems from GMOs as do most diseases in this current health crisis our country is facing. From that it trickles down to leaky gut allowing particles of food and possibly other things and causes an autoimmune response to fight these foreign particles which can be mistaken for certain organs and tissues(pancreas-causing diabetes, brain-causing OCD and other neurological issues). Not to mention all the toxins in our air, water, and food. Also lately I've watched and read on how the brain is made up of mostly cholesterol which most use statins for, which is a big mistake and lie. I'm just sharing what I've learned to inform you of what I've found as true. The best information I've found on health is in Youtube, ihealthtube.com, and mercola.com. If you want to know more in general or specific videos, you can email me at: zg03zgarrick@yahoo.com.
moroccangirl said…
My younger sister is 60 and has autism. All through her life, she seemed to very slowly "outgrow" her autism in terms of becoming more verbal, showing more facility with social language and some reading of social cues. That seems to have stopped now, and anxiety seems to have become less manageable for her. Work has always been stressful for her, but is now unmanageable. She is becoming quirkier and quirkier on the pragmatic level, but her intellect is still as sharp as ever, so it's not any kind of intellectual deficit. She develop an amazing level of social skills over her 60 years, but is now kind of uber-social in a way that really worries me. She makes very intense small talk with strangers wherever she goes, asking every kind of conversation-opener question to elicit conversation from the other person. I think she feels so competent in this new skill that she enjoys trying it out everywhere she goes, and she doesn't understand when and where it's appropriate or safe to engage this openly with a stranger. So I worry. She is married a man who has aspergers and alcoholism. Their life together is still functional, and she wouldn't think of changing it, despite my worry. She knows she can come live with me at any time, and I always remind her that she has her own space in my house all ready to go. But she refuses to consider it. So yes, aging is a big worry!
Giftbearer said…
This is very interesting. I have developed some abnormal movements and neuromuscular difficulties and am now 56 years old (they started about a year ago). I have often wondered if my Aspergers made me more predisposed to them as I got older. I have also developed several autoimmune diseases over the years. It was clear as far back as in my 20s that something was wrong and doctors kept saying they thought it was autoimmune disease. It took about 40 years before the first 2 of them were diagnosed.

I've also moticed that as society has become more complex my ability to "pass" has become nearly impossible and I'm finding it harder and harder to compensate.

There are definitely not enough services for people on the spectrum who are aging, and I've run into some serious misunderstanding and prejudice in the medical system as my health has been declining.

Myself and some others created a petition to get legislation written to provide more protections for people with chronic illnesses and conditions. There's alot of bullying that goes on in the field of medicine that needs to be stopped.

We would like to have any of you who have experienced any of these problems post your story on the petition thread and sign the petition at the bottom where it says "Reasons for signing" (all of which will go to US Health & Human Services Secretary Sylvia Burwell). To participate go to https://www.change.org/p/stop-power-hungry-doctors-from-bullying-gaslighting-and-blacklisting-their-patients?source_location=minibar

My story is the example used in the petition.

There are currently 100 signatures, but I think this is such a widespread problem (especially for those of us on the spectrum) that we can get thousands of signatures and personal accounts. In order for Congress to really recognize this problem we need to come out in large numbers and be as specific about out experiences as possible so they will know just how crucial it is that our needs be met.
rooby said…
interesting indeed depression motor problems and parkinsons all linked to low dopamine levels plus autoimmune problems they all seem to point to the endocrine system
Unknown said…
No one mentions money specifically.
I saw HUGE changes in people with disabilities when they were better off financially. Everything about them improved 500 percent.
the difference was like day and night.

Popular Posts