Thursday, April 21, 2016

Sometimes Accommodations Aren't Enough: Autism and Anxiety

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, John Elder Robison talks about why accommodation is important, yet may not be enough to help autistic people like him with co-occuring conditions such as anxiety.

John Elder Robison

With April being Autism month, the folks at TPGA asked me to write about accommodations. How about anxiety, Shannon asked? Foolishly, I agreed. After thinking about the topic for hours, till smoke dribbled from my ears, I cannot conceive of any accommodation I could request around my anxiety.

Photo © John Elder Robison
[Image: Close up of water running over a rock in a stream.]
For me, anxiety is one of the most disabling aspects of autism, and it’s with me -- at least at a low level -- most all the time. I am almost never relaxed. Life is a series of worries, some more serious than others. My next article is due. The taxes are due. The kids are in trouble. I am in trouble.

There are times I’m totally brought to a halt, and when that happens, I turn to anti-anxiety pills. To put this in perspective, I turn to medicine about a dozen times a year.

Medication or Transcranial Magnetic Stimulation (TMS) are the only things I have found that unwind my anxiety and circular thinking to the point that I can restart, and move forward with life. My only experiences with TMS were in the context of research studies. That leaves the medication as the only help in daily life, to the extent that it works.

I have to use anxiety meds very sparingly, because they are addictive, and they lose their effect over time.

Anxiety sucks.

Sometimes we can reduce our stress by changing the environment. Natural light, a quiet space, and fresh air are often soothing. For a person who’s suffering from sensory overload, such things may be enough. For a person who is anxious over the responsibilities and events of life, those reliefs are but a momentary respite.

My own anxiety has gotten markedly worse in the past decade. Last week I was at a conference where two autistic folks my age (Dena Gassner and Liane Holliday Willey) described similar escalations of anxiety in their own lives. My older friends featured in my book Switched On also share that experience. Perhaps this is an aspect of autistic aging. If so, I would not doubt that it’s a contributor to increased mortality for autistic adults.

Ten years ago, I could generally “fix myself” with fresh air and exercise. Those things still help, but they are no longer enough. More and more, I feel that life is overwhelming me. At an age where people say I should be relaxed and triumphant, I feel defeated. Not all the time but often.

Photo © John Elder Robison
[Image: Creek running through a forest]
This struggle is not a matter that can be solved solely by acceptance and social accommodation. Those are great things, to be sure, but they cannot fully address the issues of anxiety, depression, tremors, and seizures that so many autistics (like me) live with. Those co-occurring aspects of autism need to be addressed through ongoing medical research.

One of the most understudied areas in autism research is the relationship of the core of autism to these many co-occurring conditions. Studies show that most autistic people have one or more co-occurring conditions, and with such a strong association it is not really clear if they are truly co-occurring independent issues, or if they are interwoven at a low level. 

These other aspects of autism, for all practical purposes, have no good side. They cause suffering, pure and simple. I am aware that as a “total human” I possess a mix of gifts and exceptionalities. And I attribute many to autism. There is no exceptional side to anxiety. For me, that and the other traits noted are part of autism’s dark side -- even for bright and outwardly successful people like me.

It’s my hope that we will find better tools to address anxiety, because for many of us, anxiety is devastating. I have little doubt that anxiety and depression lie at the heart of many if not most autistic suicides; a thing we are at least nine times more likely to die from than the general public. In my service on government autism committees, the risk of suicide is one I am always mindful of, when we discuss the need for research into autistic mortality and adult and teen autism issues.

In my recent book Switched On I wrote of the promise of emerging technologies like TMS to treat formerly intractable disorders of the mind, anxiety and depression being two of those conditions. My book talked about my participation in experiments designed to improve perception of emotions, which is still in the experimental phase. That’s not a therapy you can seek out -- yet. However TMS is FDA cleared, and is widely available, as a treatment for depression and anxiety.

Much of the autism dialogue today revolves around acceptance, which is important. But it's also important to remember that acceptance as a concept is not mutually exclusive with treating the most disabling aspects of autism. While understanding and accommodating autistic needs goes a long way, many of the difficulties autistic people experience cry out for remediation, which existing medical techniques have yet to successfully address.

Photo © John Elder Robison
[Image: Misty wooded clearing]
It’s something to think about. Particularly with respect to the person next to you. She may look just like you from outside, even as she feels she is being eaten alive from within. That is how anxiety is.  

Say no to any treatment you want, for yourself. But be careful about standing in the way of others delivering help to those who wish it. Maybe that’s all the accommodation the average person can make, for situations like mine.