an adult trying to get accommodations for asperger’s at work – the difficulties

i’m having troubles at my job. i had told my supervisor perhaps… 6 months ago?, that i had undiagnosed asperger’s syndrome, explained to him that i’ve been attending support groups and trying to find ways to get an official diagnosis, but my insurance won’t pay for it and any private way i can find to get a diagnosis tends to be $800-2000, which i can’t afford. and i brought up other stuff that’s been going on at work, that i’m the one designer placed in an organization with people who, quite frankly, are not designers, and there’s always a dichotomy there… so just problems going on.

anyhow, it’s coming to a boil, or head, or whatever the aphorism/metaphor is, and went for a walk/talk with the hr person from work today, and laid out everything that’s been going on. point 3 of 4 was what i mentioned in the above paragraph, and that when i’d mentioned to my supervisor earlier this year that i had (undiagnosed) asperger’s syndrome, he’d told me that it didn’t matter, pretty much, whether or not i had asperger’s, that even if i did it wouldn’t affect the work situation. which was after i’d told him i had asperger’s and suggested that we talk about ways we could circumvent any communication issues with my coworkers that might result from me having asperger’s.

i’m running on with this. so much going on. but basic jist, hr person told me that, yes, having an official diagnosis was the by-the-books method of getting accommodations…. i then explained to her that i’ve been trying to figure out how to get an official diagnosis, but the costs are too high, and my insurance won’t cover it, but i’ve asked my doctor for referrals, and talked with someone i know who happens to be a social worker and asked her for help, and have attended adult support groups for people with asperger’s… and she told me that if i could, perhaps, get a letter from my doctor, and maybe a letter showing that i’ve been trying to get help, then that could possibly help my case. not sure, it was a precursory discussion, i’ll find the realistic details tomorrow.

anyhow, i emailed the social worker friend, asked her if she could write something up, and this is what she sent me, and she asked for my comments/edits:

To Whom It May Concern:

I am writing to you on behalf of -X-. My name is -Y- and I am a licensed clinical social worker in San Francisco. I have known -X- for a couple of years. I met her through my partner who also has Asperger’s Syndrome. -X- attended several different support groups in San Francisco and the East Bay with my partner for support and to try and create a social network of other people with Asperger’s. However, because one of the most prominent symptoms of Asperger’s is difficulty with creating and maintaining social relationships, her participation in the groups was not sustained. I also believe this was because in many ways -X- was “higher functioning” in some ways, in that she had been able to maintain stable employment for some time, and this was not the general experience of the group members in the various support groups.

As -X-’s friend I have also been aware of the difficulties she had been having at her current workplace. It can be intimidating for people to reveal that they have Asperger’s because employers and co-workers generally don’t understand what it is, or hear that it is on the Autistic spectrum and form unfavorable opinions. People with Asperger’s in the workplace are often ostracized because they are unable to meet the overt or unspoken social expectations there. People with Asperger’s often have overwhelming sensory experiences, and need accommodation, for example, to have dimmer lights, wear headphones so background noise is diminished and have a workplace setup that is more private.

Because most of the services for people with Asperger’s, at least in the Bay Area, are for children with this diagnosis, it can be difficult if not impossible to receive assistance, advocacy and support as an adult. The diagnosis was “legitimized” in 1994 by its entry into the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders), however, as you may know, it has just, in the last couple of years, been talked about in the media and information has become more widespread. Accordingly, adults with Asperger’s have often been misdiagnosed for years and have had great difficulty with either understanding themselves “what is wrong” or don’t have guidance about how to talk to employers about the accommodations they need. Indeed, people with Asperger’s often attempt to “fit in” as best they can to do the job they were hired to do and often this ends in workplace problems and/or dismissal.

Since -X- began working for -organization-, she has asked me for advice on where and how to obtain an “official” diagnosis, how to obtain assistance regarding workplace accommodation and referrals for psychiatric services. As I mentioned above, most of the resources that I found were for children on the Autistic spectrum. The referrals that both -X- and I tried to access were either unable to help adults or cost-prohibitive. There truly seems to be nowhere to turn for advice about how she can obtain a diagnosis without having to pay a lot of money out-of-pocket or how to find an advocate for her workplace difficulties. As -X- ’s friend and as the partner of someone with similar struggles, I sincerely hope she will be able to get the accommodation she needs to continue her employment.

i read that, and i started crying, right here in this bar i’m sitting at, having left work early to get away from all the job problems i’m experiencing there. also, the person who wrote what you just read above completely rocks in so many ways. this is one of the most succinct, well-communicated ways about the difficulties a person with asperger’s has in the workplace i’ve read in quite a while.