Getting Older With Autism - presentation to Interagency Autism Coordinating Committee Oct 26, 2022

 I have been involved with autism advocacy for 25 years. Throughout that time, particularly during my 15 years of government service, I mostly advocated for autistic people younger than I. But at age 65, I am here to ask: What about the older autistic population?  We have unanswered questions, and we also need support.  I’d like to share some of the things I’ve experienced.

All autistic people have some degree of blindness to the unspoken messages of others. It’s part of the diagnostic criteria.  What about blindness to ourselves? That is less studied but equally real. I don’t have a good sense of when I am hurt. I don’t know I’m too cold till I see the frostbite. I don’t know when to stop or when to back down.  I don’t know how to read my own body.

 

When I was 50, that didn’t seem to matter much.  If I miss medications now, I may die.  If I overstress myself now, I may suffer injuries I can’t recover from. Every year the stakes for “failing to read my body” grow higher. Isolation is a recognized problem for autistic people and it’s worse in old age.  How many people like me die alone because they are out of touch with their bodies and their needs, and no one is there looking out for them?  No one knows.  

 

Growing older, I feel I have gotten more autistic in some ways.  The same is true for many autistic friends. We are more inclined to be alone; we are more isolated.  Tics and mannerisms long lost, have resurfaced.  I seem less mindful of the need to look at other people; my social skills have slipped. 

 

That is contrary to my observations from a decade ago, and the findings of some studies, which say people with good cognitive ability tend to see their disabilities diminish with age. Ten years ago, I observed how much more successful I was in social situations than, say, at age 20.  I saw how much benefit I’d gained from learning what my autistic strengths are, and how to use them to the best advantage – something that comes with life experience. 

 

Those things are still true today, but they are less meaningful.  I’m not as inclined to be social. I am more at home alone.  My autistic technical abilities brought me success in many domains – engineering, music, photography, and writing . . . but I doubt I could replicate those successes with my current cognitive abilities. I’m not as flexible. Not as patient.  Not as full of new ideas.  

 

All those same feelings might well be expressed by any aging person. We hear of senior moments, slowing down.  Are autistic people different in that regard?  I don’t think anyone knows.   

 

An old friend with autism had part of the answer. He said, “when I hit 55, it’s like my ADHD fueled energy just ran out.”  That is very much how it feels for me.  Ten years ago I served on this committee. I served on INSAR’s board.  I held two teaching appointments and did 25 speaking engagements every year. All while running my automobile complex here in Massachusetts.

 

Looking back, it was surely ADHD-fueled energy that kept me going, and it isn’t there now.  In terms of accomplishment, or my ability to accomplish things, that is a great loss. I cannot do what I used to take for granted. If I look at the diverse range of things I did in 2017 – five years ago – and the range of things I can do today, it is much more limited.  That is not by choice.  I cannot do it all anymore. My ability to juggle disparate cognitive-intensive tasks and get them all done was considerably better than average. That is no longer true.  

 

Ten years ago, I was confident and full of energy.  Now I am anxious, worried, and tired.  There is no question that my anxiety has increased these past few years.  Is that autism and aging? Or a side effect of covid? I don’t know, but before covid, I knew older autistics who became more anxious. At INSAR conferences, I saw older autistic friends become paralyzed by anxiety. That is a serious and overlooked problem in autistic people with otherwise good cognitive function, and I feel it worsens with age. 

 

I have just enumerated some ways in which it feels like I’ve diminished with age.  Luckily, I am surrounded by people who care about me and look out for me.  Without that, in isolation, I can well imagine that I would come to the rational decision that suicide is my best option, as there would be nothing but pain to look forward to.  As someone who has lived with depression and anxiety all my life, and who has been in that place more than once, I urge you to take that seriously.  If I – seemingly well connected to society, articulate, and capable – can get to that place, how many of my fellow autistics who do not have my advantages, choose that way out?

 

The problem to solve is a societal one, not an individual issue. In earlier IACC meetings, we discussed the emerging realization that intellectually disabled and non-speaking autistic people might have as much or more suicidal ideation as non-intellectually disabled autistics. Suicide is a lifelong risk for us, no matter where we fall on the spectrum. 

 

A recent Labor Dept study found 7% of Americans were self-employed. A Dartmouth study of desire found 70% wanted to be.  I’ve been self-employed most of my life because I had no choice. Being autistic, I did not have the social skills to navigate work life in large organizations. That’s a side of life the stats don’t capture.  There is a way we can see it, though. The prevalence of autism and neurodevelopmental disorders among the homeless and incarcerated is well above the prevalence in the general population. Brugha and later studies show older autistics, as a group, end up worse off than the general population. Given the contributions we make to the world, that’s wrong. 

 

At 55, I felt like I could keep working forever.  At 65, I feel I have no choice but to work forever. Those are very different perspectives.  I – and most older autistics – have absolutely no government, academic, or corporate retirement plan.  In saying that, I am not counting social security and disability. I am talking about retirement funding that provides a decent standard of living in retirement.

 

The only retirement I have is what I make, by investing and building assets.  It’s easy for any older person to say “that’s just the same as me,” but it’s not.  Those of you with government, tenured academic, or corporate jobs get your retirement security by being part of a social system where you are employed.  As long as you remain in the social system for the duration, it takes care of you. I know of no statistics on this, but I suspect the number of autistic adults who successfully run that social skills gauntlet is small.

 

Reflecting on that, I realized the issue is not the money. Now, don’t get me wrong – money for retirement security is very important.  But I think the social network afforded us by employment is actually even more important. That is something I could not see when I was young but I see it very clearly now.  Work is the place where so many people make friends, find life partners, discover new interests, and join a social web that nurtures and protects them in times of stress. In that respect, the workplace is far more than just a job.  

 

Years ago, when I tried to fit into a large company without success, I sneered at the people standing around the photocopier, gossiping.  Why weren’t they working?  They were just wasting time. Now, I realize that gossip I thought was a waste of time actually nurtured those people and represented valuable social support for many.  Reflecting on my attitudes at the time, it’s fair to ask:  Did they exclude me? Or did I exclude myself?

 

To help autistic people fit into workplaces and become more socially connected, I would start with this suggestion, which I suspect every autistic person listening will agree with: Fix the ugliness in our schools. That’s a tall order, but that ugliness not only leaves millions like me with psychic injuries – and the resultant disabilities - that last a lifetime; it is the breeding ground for today’s bumper crop of school shooters and others who pose a far greater threat to society than people like me. Our mistreatment in school throws up barriers to success at work.

 

That stigma of childhood rejection follows us into adulthood, where it joins with our autistic social disabilities to cause endless missteps in our efforts for social engagement.  Many autistics respond by withdrawing. Others turn to drink.  Some succeed in connecting, either with one person (and that may be enough) or with many. Many of us succeed at some level, but we live with more sadness, anxiety, and isolation than anyone would want. 

 

There is a whole generation of 40+ autistic people who grew up with no diagnosis.  Many of us are just going along, aware that we are different from others, and often feeling we are “less.” With no understanding of our neurological differences, how could we see things differently? 

 

Having talked with many such undiagnosed people, I believe the last thing they want is for someone to say, “Hey! You act autistic! You must have undiagnosed autism.”  When presented with a potential paradigm shift like that, they reject it because of autism’s stigma.  That was certainly my first reaction. But in my case, the therapist handed me Tony Attwood’s original book (Asperger’s Syndrome – a guide for parents and professionals), and he said, “No, really, it’s not what you think.  Read about it”. He had highlighted passages that did indeed match me.  

 

But the autism stigma was still a hard thing to overcome. At first, I saw a disease with no cure. I thought it was why I’d failed, and I’ll never get better.  That’s not how discovery has to be for us.  This is where neurodiversity comes in.

 

If we are presented with the neurodiversity paradigm instead of a medical diagnosis there’s a chance for a better outcome to those conversations. Hearing that we have a different kind of brain is fundamentally different from hearing we are “disordered.”  We are stronger in some ways and weaker in others.  We start by talking about balance, not a list of deficits.  We start with diversity, not disorder.  

 

The place I really see this happen is in workplaces with many neurodivergent people. I can give you one example. Some of you may know I am the neurodiversity advisor at the Lawrence Livermore National Lab.  The lab is one of the world’s premier scientific institutions.  Engineers and scientists at the Lab work on some of the most difficult scientific and technical challenges known to mankind.  Success often requires extraordinary cognitive gifts.  Often, those gifts are accompanied by diminished abilities in other domains.  So many brilliant scientists and engineers have terrible trouble with human relationships.  As an autistic person, I see neurodiversity at the root of that. Not autism.

 

If I were to say, “you act autistic” to an accomplished scientist, he would very likely reject the notion, because autism is a medical term for disability.  Any conversation about autism starts with deficits. Deficits imply failure, and most people working at a place like Livermore would not be characterized as failures, no matter how they see themselves inside. 

 

If, on the other hand, I explain how the neurotype that makes them so successful in the technical arena might hamper them in social settings . . . we have the basis of a conversation that leads to understanding. At the Lab, enlightenment has been as transformational for some of them as it was for me, years before. 

 

So who might initiate these conversations? I think neurodiversity at work programs are going to move in that direction.  One thing Livermore is doing in their neurodiversity work is directing the focus onto neurodivergent people who are already employed there.  That’s where companies will get real benefits.  Make a few thousand existing workers happier and more productive, and you win big; more so than anything you’ll get from a dozen token “ND at Work interns.”

 

Companies that believe in neurodiversity should see that the neurodivergent population they need to reach is not out on the street waiting to be recruited.  It’s on the job right now.

 

Outside the workplace, once you are dealing with people who have aged out of the public school’s special ed supports, I suggest medical and counseling professionals begin to replace their autism language with neurodiversity language.  Less stigma. More connection. We will need a lot of training to get medical and counseling professionals into this new space. 

 

Here’s a final thought on neurodiversity in this space.  You know me as an autistic person.  But my multitasking was always in the ADHD arena.  My errors in reading are dyslexia, just like my son. My tremors are hints of epilepsy and possibly Tourette’s. Saying I have a number of “comorbid conditions” verges on insulting, and it has no meaning to me.  Saying I am neurodivergent . . . that feels like the right thing to say.  That’s me.  Others feel different. We should respect all our personal choices in that regard.

 

Before I ask for questions or comments, I’d like to offer these thoughts:

 

I served two terms on this committee, and I am proud of most of what I said and did.  There is one thing I regret.  I regret the times I criticized or mocked people who attacked me or said things I thought were ridiculous. To those of you hurt by my words, I apologize. 

 

Serving on the IACC comes with a duty to advocate for ALL autistic people, no matter who they are or how they feel about autism, themselves, or this committee. Our job, in representing the autism community before the Federal government, is to do our best for all autistics, without favoritism.  Today, you are here to guide tomorrow's scientific research as you are guided by today’s knowledge. Every person who comes before the committee went to some trouble to do so, and they deserve attention and respect. In the last years of my service on the IACC, I came to believe those words apply most of all to the people who oppose us or hold views we think are wrong or even dangerous. We are their representatives too.  

 

It's up to you on today’s IACC to carry this advocacy forward, and I urge you to do so with kindness, respect, and wisdom.   

 

John Elder Robison

October 26, 2022