Grumpyhatlady and Chums

I was asked by a real life friend to repost this on my blog. It has already been posted on her blog A Normal Weirdo… I find it sad that even those employed to support people with autism have these preconceived ideas and prejudices. This is an interesting read.

Normal Weirdo also let us share her fantastic Flying Bob blog post back in March.

The Disability Adviser
By NormalWeirdo

I do not think I have mentioned my experience with the college disability advisor. Well that experience was full of clichés and misinformation, stress and tension. It was a few weeks ago now, so exact details are sketchy but there are a few things I will never get over.  The worst being told my diagnosis must be wrong as “Autistics don’t come here [college]“.

Here was a woman, employed by one of the largest colleges in the country to facilitate support and understanding displaying ignorance of the type usually reserved for use by the average Daily Mail reader. And she was the autism specialist.

She started by telling me my understanding of autism was all wrong and finished by telling those involved in my teaching that I am disabled in areas I’m not yet didn’t mention the areas I need most support. So then this non- professional has decided my diagnosis of Childhood Autism, complete with diagnostic report in front of her was wrong and that instead I must be an “Aspie”.

Now don’t get me wrong I’ve used that term myself but there is a huge difference between self-reference and an alleged professional persistently referring to a client as an aspie. To me it’s like a professional referring to someone with Downs Syndrome as a mong ,retard, or Downie That said, I stopped as soon as I received my official diagnosis as it was not Aspergers.

If I did have Aspergers, I would want it referred to as aspergers and I would want to be labelled a human, not an aspie. Her persistent reference to aspie became wearing and I was even more annoyed to discover the forms she designed for her needs report didn’t cover autism, as remember we don’t go to college. So now the report that has passed to all my teachers says I have aspergers. Which I don’t have!!!

It doesn’t stop there. As we continued with her personal assessment she demanded more proof of my “aspergers” in the form of the full assessment report. When I told her the diagnostic report should suffice she asked, ” you do understand the difference between the assessment report and the diagnostic report don’t you?” Despite my answer to the positive, she went on to define them in her terms, finishing with she needs the, saying slowly, “Aahhsss-esss-ment” report. She can keep on needing.

She then delved further, telling me that she needed my assessment report as they needed to rely on the medical model of disability to provide support, not the social model of disability. I feel this is a blatant breach of my privacy. My assessment report refers to my childhood and has no bearing on my adult life. There are no hints in my childhood difficulties that will alert her to my adult support needs. All it talks of is my love of smooth stones and inability to undertake imaginative play as a toddler.

She went on a about how this was about public funding and tax payers money and they could not take any old statement as fact without proof from a doctor.  She then questioned my diagnosis again, asking if I didn’t speak until I was 5. I told her I was a very early speaker. This apparently supports her decision that I need reassessed. Even after telling her how difficult I found the assessment procedure. When I said I didn’t understand why I had one diagnosis over the other, autism and not aspergers, (why did I even need to justify myself) she said I was “to ask at my next appointment and let [her] know as [she'd] be interested to hear too”

Apparently no one had told her what a horrific experience the assessment for autism can be before and she was “surprised at such feelings in an aspie”. When I claimed it was very impersonal, she told me she hadn’t heard that before as any “aspie” she’s met didn’t care about impersonal “because they have restricted emotion and are locked in their own world of experience”.

By now I was too shocked to leave, which would have been my first choice. I had to keep her on side to get the support I need but what I wanted to do was scream and shout at her. I highlighted people with Autism are as individual as she is from the rest of the human population and that she shouldn’t generalise. I pointed out we weren’t just a set of symptoms in a book. But hey what do I know? I’m just an “aspie”, apparently.

So we got down to the kinds of support I thought I needed. Of course I need a doctor’s letter to back up every claim, having a diagnosis of autism and having sensory overload, agoraphobia etc apparently isn’t enough. She needs more proof than my saying I conform to whatever symptom in the book she has read. I already supplied a psychiatrists letter describing my agoraphobia and my difficulty going places on my own. What more did she need?

When I told her of my trouble going anywhere alone she again said I needed a doctor’s letter to specifically confirm this, remember she had the psychiatrists letter. The fact that agoraphobia or anxiety at public transport or going new places is a very common symptom isn’t enough. Now she was not referring to the sacred manual, My say so wasn’t enough. And let’s face it, a doctor won’t write a letter on my say so just like that either.

She discussed completely irrelevant supports for me and ones that were of interest she told me weren’t suitable for me. For example the National Autistic Society have someone who offers support but she decided I don’t need social support as I can talk and converse without too much difficulty. As if that’s all there is to socialising and social communication.

She then told me as an “aspie”, counselling wasn’t suitable as it’s about self-reflection and “aspies” don’t do self-reflection and they don’t like talking about themselves…. hello? More often than not that’s one of the largest social problems, too much self-reflection and difficulty realising people don’t want to know about you and your special interest.

So instead she strongly advises I see a mental health adviser. I’m not entirely sure how my mental health team will feel about that. She thinks it will help with anxiety (?)and teach me CBT.  Except,my mental health team have admitted I am no longer (if I ever was) mentally ill. And my anxiety is only when I have to go places unsupported… So she admits I have that for one purpose but not another. Talk about confusing.

I like to think am quite a strong person but even I had difficulty with that 2 hour meeting. I’m sure I’ve missed huge important bits out and I don’t know if I’ve conveyed how backwards this woman’s attitude was.

I’m sure if I’d been dyslexic, she’d have told me I couldn’t read. She really was that ignorant. And the air of superiority she gave off was not that of a caring support professional. In the end I didn’t get to ask about parking permits or allowing a carer into the library or gym with me in evenings or dark mornings. I don’t want to have to go back to see her and definitely not alone.

I honestly don’t know what my next step is. What I do know is that I won’t get the necessary support because of this woman’s prejudices. I am NOT an “Aspie”. I don’t have aspergers and if I did, I still wouldn’t want to be referred to as an “aspie”. If I were Pakistani, I wouldn’t want to be referred to as a paki. How is this any different? I am AUTISTIC. It took me 4 decades to persuade someone something was different, I sure as hell don’t want that taken away from me now for another wrong label. She’s the boss, I wouldn’t know who to approach to find out who her superior is, complaining seems pointless.