Tag Archives: health

Health

Improving Access to Health Care for Autistic Adults

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When I posted about my kidney infection saga last summer, a lot of you shared similar stories about difficulties with getting the right treatment for an illness.  Often the stories revolved around how hard it is to get proper diagnosis and treatment when your body and brain are atypical in ways that a lot of doctors are not used to seeing. There were a few themes from that post that stayed with me:

  • We often have atypical symptoms and atypical reactions to medications
  • We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
  • Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
  • Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it

Today’s post at Autism Women’s Network touches on all of these issues plus a few more that I’ve encountered in reading other autistic adults’ experiences: Accessible Health Care for Autistic Adults

In an ideal world, health care providers would receive training in making care more accessible to autistic adults, and maybe that will be the case in the future. Until then, those of us who feel comfortable doing so have some self-advocacy options:

  • Ask our health care providers for the accommodations that we need to make care more effective. This is a hard one because there is an inherent power differential in the doctor-patient relationship. Sharing general information articles like today’s AWN post and the information for providers at the AASPIRE website can be a good way to start a conversation.
  • Share information about doctors who are autistic-patient-friendly. AWN is creating a crowdsourced directory for women’s healthcare providers which is a great way of making information available to a larger number of people. Within the autistic community, there is also the opportunity for informal sharing among people who live in the same city or community.
  • Take advantage of resources like a personalized AASPIRE report to share our specific needs with doctors we see regularly. The AASPIRE reports are very detailed and probably beyond the scope of a short one-time visit to a new doctor, but they could play an important role in an ongoing doctor-patient relationship.
  • Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.

I’m sure I’ve missed things, both here and in the AWN article so, as always, I’m looking forward to your comments.

 

Health

Growing Older on the Autism Spectrum

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What does it mean to grow older on the spectrum?

Thanks to my Aspergarian nature, I don’t feel middle-aged but my body often tells me otherwise. My hair is going steadily gray and I’ve got the beginnings of arthritis in my hands. My joints pop and crack after I’ve been sitting too long. I’m in denial about my need for reading glasses. Pretty standard growing older stuff, whether you’re on the spectrum or not.

It’s the nonstandard stuff I’ve been . . .

. . . worrying about?

Not quite. I don’t worry about much and certainly not the distant future.

. . . afraid of?

Too strong a word.

. . . wondering about?

That sounds about right. I’m perpetually curious about all sorts of important and unimportant stuff. Before I started writing this, I searched for studies about Asperger’s and aging. Not surprisingly, I only found one and it wasn’t conclusive. (It did have one slightly alarming hypothesis about why autistic adults might not fare as well as neurotypical adults in old age. I’ve summarized it at the bottom of this piece if you’re curious.)

So, here are the things that I’m wondering about as I get older.

1. I wonder if I’ll be able to avoid a serious fall when I’m less physically resilient. I have a tendency to trip, fall and bump into things. No matter how vigilant I am, it happens. In the past month I’ve taken a couple of dives, one while running on a country road and one on the slippery locker room floor after swimming. The first got me a nasty case of road rash and the second resulted in a sore shoulder–relatively minor injuries considering how hard I went crashing to the ground both times. I doubt that will be the case if I take a similar fall a couple of decades from now.

2. I wonder if the recent decline in mental endurance is the beginning of a downward trajectory that will eventually limit my capacity to concentrate or work as I get older. Since hitting my forties, I’ve noticed that I tire more quickly during tasks requiring intense concentration. Powering through is no longer as appealing or even as feasible as it was 10 years ago. To compensate, I’ve been taking more breaks during the work day and giving myself permission to rest when I need to. I set smaller goals and reward myself for reaching them. I try not to have unrealistic expectations of what I can accomplish in a day.

3. I wonder if my decreasing willingness to endure things for the sake of pleasing people will turn into a liability. So far it’s been a positive development–increasingly allowing me to say no when I want or need to–but I can see how, if I’m not careful, I might wake one day to find I’ve become a crazy old cat lady.

4. I wonder if I’ll be able to keep up my exercise routine. Exercise keeps me sane. I need to run or swim regularly to burn off my excess energy and generate the cocktail of good chemicals that balance my brain. I figure this should be possible at least into my sixties, assuming I don’t seriously hurt myself first (see #1).

5. I wonder what life will be like if my husband dies before me. I enjoy his company in a way that I don’t enjoy being with anyone else. He and my daughter are the only two people I feel truly comfortable being around. I can’t imagine wanting to meet someone else. I’ve never lived alone. Whenever I read a new story about a married couple who’ve died together–in a plane crash or some other horrible accident–my first thought is always how lucky they were to have passed away together and avoided being widowed.

Wow, where to go from there? How about some positives?

As I get older, I’m softening up. I’m more patient with myself, more accepting of my faults, more compassionate. I’m less concerned with pleasing others, less worried about being accepted or thought of as “normal”.

Since learning about my Asperger’s, I feel like I’m actively healing the scared little kid that I was and integrating the fragmented parts of my self. I don’t think this would have been possible in my twenties or thirties.

In a lot of ways, I feel like time is my ally. I still have a lot of it left and I’m determined to make the best of it.

Geek Alert: What the Science Says about Aging on the Spectrum

A search for some scientific background about aging and autism turned up only one study, which evaluated people over 60 with autism (mostly with Asperger’s Syndrome) against similar age controls on a variety of cognitive domains. The results were mixed, but the researchers threw out an interesting hypothesis in their discussion. Adults (and adolescents) with ASD tend to use more and larger areas of their brain than neurotypical adults when performing certain cognitive (executive function) tasks. As we age, the NT brain makes a similar adaptation so that elderly NTs also use more and larger parts of their brain to compensate for the degeneration of the brain associated with aging.

The researchers suggested that a faster decline in certain cognitive areas among elderly people with ASD might be a result of the brain’s inability to recruit additional areas for cognitive processing, since this was adaptation that they’d already made earlier in life. On the positive side, there were some areas where adults with ASD performed better than controls. Obviously this is only one study with a relatively small sample size so it what it can tell us about aging on the spectrum is limited. Either way, I suspect we can learn more by listening to older adults on the spectrum than by cognitive testing in the lab. If you’re an autistic person in your fifties or sixties or older, I would love to hear from you in the comments.