This article describes what happened after I received my second diagnosis of Asperger’s Syndrome. (At the time, I was nineteen and half way through an undergraduate degree in Creative Writing and Drama). It’s highly personal, and I feel the need to highlight that not everyone whose been diagnosed with Asperger’s Syndrome will have had the same experience I did.
After a lengthy, gruelling and down right intrusive assessment process, my physiatrist suggested the following:
‘Gwen will require an Asperger friendly approach which takes into account her ability to cope with stress, her processing difficulties and relationships. At an individual level Gwen will also benefit from cognitive behavioural therapy (CBT)… she would require specific support which is as follows:
– Overall sensory integration and management as it seems to affect her education and social engagement
– Counselling with regard to sexual orientation
– Self-image- she needs support in this area as it will enhance her creative potential’
So… now I had a diagnosis and a document specifying which areas I needed additional support with. My problems were over! I’d finally be given adequate, autism friendly support with my sensory management, sexual orientation and self-image. After all, an expert had been paid £1000 to determine this support was necessary for my health and wellbeing. It would have to be provided now- right?
Wrong. It’s now four years since my adult assessment for Asperger’s Syndrome and haven’t had any cognitive behavioural therapy. (Given the average waiting time for therapy is currently eight months, I’ve pretty much given up on the idea). My social worker did arrange for me to have some counselling sessions a few years ago. But these were brief (just 30 minutes every two weeks) and tended to focus subtract relaxation techniques rather than the areas my psychiatrist had specifically flagged up.
I was often surprised by how little the therapists I saw knew about autism. During one session, my senses had spiralled into overdrive, and the sound of footsteps coming from upstairs was all I could focus on. Each step burned a whole in my skull. I explained this to my therapist, and she told me not to worry. She’d soon get me back to normal! After all, she could hear that noise and wasn’t bothered by it. Clearly this woman knew nothing about sensory overload. One time my social worker had asked me to start talking about something difficult, and I went into meltdown and flapped my hands (an involuntary movement that helps me deal with anxiety by using up excess energy). The social worker knew about my diagnosis, but had no idea what was going on- she thought I was hitting myself! Where the hell was this ‘autism friendly approach’ the experts deemed necessary?
I found counselling useful to a certain extent. Just knowing that there was someone there to talk to and I had a safety net in place for if my mental health got worse was a huge relief. However, the counselling sessions were just too short and too irregular. I sometimes forgot to attend, and when I did attend it felt like my issues weren’t being worked through at all, just brushed under the carpet.
I got no additional support with sensory integration. However, over the years I’ve managed to use my own strategies (such as sunglasses, fiddle toys, ear defenders and music on my I pod) to reduce my risk of me going into overload. I also learned to avoid spending time in busy environments that might trigger sensory based overload, such as busy shops, clubs or festivals.
This avoidance strategy has improved my mental health, but it’s also had a detrimental effect on my social life. I’m a woman in my early twenties, and most people that age want to spend their free time clubbing, at house parties or similar environments. Pubs can be a difficult environment for me, and I refuse point blank to risk attending a club or a house party because they’re just hell for me. So Saturday nights are usually spent in front of the telly with a glass of wine and my pet lizard for company. It’s also hard for me to meet a potential girlfriend. Gay bars are just as noisy and uncomfortable as straight ones, and in the unlikely event that I meet someone who likes me, I’m usually clueless because I’ve failed to pick up on their body language.
I still struggle with my self esteem (or ‘self image’ as the psychiatrist put it) but on the whole that area’s improved a great deal. I no longer suffer from depression, and my writing/my full time job as a skills mentor has given me a sense of purpose. But the best thing I did for my self esteem was coming to terms with my diagnosis of autism. I started volunteering with autistic kids when I was eighteen, and knew nothing about my own disorder. When I learned about their autism, I learned about my own, and I started to be kinder to myself each time I had a melt down. I loved the autistic children I supported. There was nothing “wrong” with them, and they certainly didn’t need to be changed. Perhaps I didn’t need to be changed either…
Those of you who’ve just been diagnosed and are struggling to find the right support, keep fighting. Benefits cuts are still being made left right and centre. You’ll have to jump through hoops, demand funding, attend countless assessments and fill out form after form before you’re provided the support you need to survive. I wish the world was a kinder place, but it’s not.
Keep trying. Keep looking after yourself. Research autism as much as you can, and learn to self manage the areas you find difficult. Explore new things and eventually you’ll find your niche, just like I found mine. I’m incredibly lucky to work in at an education service for adults with autism- an environment that meets my needs as well as the needs of my clients! Naturally, the staff all have an awareness of Asperger’s and are prepared to make reasonable adjustments for my disorder as and when they’re needed. Please remember that wherever you work, live or study, reasonable adjustments are a legal requirement, not a special privilege! However hard you have to fight for it, you deserve an environment where you feel safe and can function to the best of your abilities.
Diagnosis is just the start. You’ve got the rest of your life ahead of you, and while it’s probably going to be nothing like you imagined, it will still be magnificent.