Thursday, September 13, 2012

Should an adult get an autism or sensory processing disorder diagnosis?

Most autism and sensory processing disorder websites, books, organizations, and the like focus on children with those conditions. Those resources only focus on adults to the extent that adults are the teachers, family members, medical practitioners, or others involved in the lives of  children with autism or sensory processing disorder. There are some resources for adults who are autistic or have sensory processing disorders, but the emphasis is on children.

So it is not surprising that it is often difficult to find a medical professional to assess or diagnose an adult who wants to be evaluated for autism or sensory processing disorder. Many ask, should adults even bother to try to get a professional assessment? Of course, that is for each person to decide for himself or herself. I did get a professional diagnosis. And I'm glad I did. And, as you probably guessed, I'll tell you why.

I used to think there was a long list of things "wrong" with me. To list just a few:

1. I am antisocial. Most of the time I'd rather be alone than be around people. 
2. I am rigid about following rules...and about you following them too!
3. I am very clumsy.
4. I am blunt; some say honest to a fault. 
5. I have a low frustration tolerance.
6. I don't like casual contact, like shaking hands or hugging.
7. I get irritated when people act irrationally...their "feelings" sometimes irritate me (yes, I get the irony).
8. I am easily overstimulated by visual or auditory stimuli and either meltdown or shutdown if I can't get away.
9. I have little patience with most casual conversation.
10. I like a plan. Spontaneous is not my thing.

I could make a much larger list. And I did make a much larger list in my mind when I thought of all the things that were wrong with me that needed to be fixed. My mother and sister are fun, spontaneous, social, patient, free spirits. The popular girls and woman are the same. I am their opposite and for a very long time I wanted to be like them. I wanted to fix all those wrong things about me. 

When I was told that I might have autism and, like an estimated 85 percent of people with autism, sensory processing issues, I started to entertain the possibility that much of the long list of things wrong with me were as a result of the autism and sensory issues. In fact, every one of the characteristics on the list above is a common trait of autistic people with sensory processing issues. If I was autistic, that would explain most of my failings. It would make it not my fault that I was so difficult to get along with. It would make it not my fault that I was not popular. But maybe I did not have autism at all. No sensory issues. I just wanted to believe I did so I didn't have to believe that I was just messed up. Self-diagnosis was not for me. I quickly became annoyed at my own ruminating and sought out a medical professional to assess me and tell me for sure. 

The woman who diagnosed me said she had little doubt after the first 15 minutes that I have autism and sensory processing disorder, just as my doctor had suspected. But of course she did the assessments to be sure and to have the paperwork complete. The diagnosis helped me believe and accept that all the autistic things about me do NOT mean that I am broken. I'm just different. After my diagnosis, the list of things changed. Now, for example, the ten things I listed above look more like this:

1. I like people, but I need a lot of time alone. 
2. I feel safe when I have rules because I don't have to guess what I'm supposed to do. I like it when others follow rules I don't have to figure out what they will do and why.
3. I am clumsy, but it's not a big problem for me and some people even find it endearing.
4. I am direct, but people know I am being sincere when I give them compliments. They know if they ask me for advice I won't just tell them what I think they want to hear. 
5. I am frustrated easily and that's ok. It's what I do when I get frustrated that matters.
6. It's ok not to want to be touched. There are lots of people who feel this way. And it would be ok even if I were the only one.
7. Not everyone thinks like I do. Just realizing that helps.
8. It's ok that I don't want to be around bright lights and noise. 
9. I don't have to make small talk. Most people really don't care.
10. My planning abilities are a big help in many situations. And sometimes a plan to have no plan is still a plan.

Some people may be able to self-diagnose themselves with autism or sensory processing disorder and revise their lists. I needed the professional diagnosis before I would believe it. 

How do you feel about this issue? Self-diagnosis or diagnosis by a medical professional for adults. Does it matter? Why? 


agear said...

What type of doctor or prefessional did you go to? I would like to get diagnosed too if that is what is wrong with me. I just don't know what type of doctor or person to see. Thanks for writing this post. I am glad I found it.


Emily Morson said...

Love your new list!

I've seen professional diagnosis make a huge difference for people, the same way it did for you. For someone who went to college, works, does all the other normal stuff, it's just so easy to agree with other people's narratives about "laziness" or "rudeness" without that professional confirmation. As far as I know, there aren't a whole lot of services for adults with autism or sensory processing disorder, but even to access these it helps to have a professional diagnosis.

What sort of assessment did you end up getting--doctor, neuropsych, occupational therapist, something else? I know neuropsychologists usually diagnose people, but they barely assess sensory and motor functioning at the most elementary possible level (their tests were originally designed for people with brain damage). Occupational therapists tend to do a great job with sensory and motor functioning, but how well do they do at diagnosing things like autism?

Sorry if I've missed this in an earlier entry, but what makes a good "sensory diet" for an adult? Everything I've read about sensory diets involves things like play-doh and children's toys and crafts which are inappropriate for an adult, too easy, or not possible within workdays and daily routines. How have you dealt with this?