How I Got Diagnosed With Aspergers Syndrome

Image title reads autism how I got diagnosed with aspergers syndrome, to the right is an image of a checklist on white paper being ticked off by a pink highlighter pen.

I was 11 years old when I first remember not being able to get out of the door. I physically couldn't bring myself to leave the safe environment I had built at home. The comforting predictability of my bedroom. Of course, at this time I didn't know it was the comfort of routine and predictability that I craved, all I knew, and all I could tell a therapist was that I couldn't get out the door.
Over the next 10 years every avenue was explored. I'd make temporary progress but still end up back where I began. Anxious, hating myself and still not being able to get out the door. Was I being bullied at school? Yes, but it wasn't fear that was stopping me from going outside. Was I suffering with abandonment issues because of the situation with my father? Not really. Did I have crippling social anxiety and terrifying thoughts of embarrassing myself. Again, no, I was quite oblivious to the opinions of others, and I still am half of the time. Round in circles, speculative diagnosis after speculative diagnosis. Nothing set in stone. No solid ground to work upon. Just 'maybe it's this' for ten. whole. years.

It was 6 days after my 21st birthday that I received my official diagnosis. The referral came about after spending two years working with a social worker in a counselling setting. We'd covered the same ground, walked the same circles but some of the things I'd said had caught her attention. The way I described washing my hair to a set rhythm and amount of rinses, how I'd explained my reaction to a social interaction as involving a book in my head that I have to refer to find the right answer, how hello isn't instinctive to me. We discussed how upset I would get if my mum took an unexpected day off work, how I would become distressed if tea wasn't ready at the same time everyday. She noted my inability to understand my mothers point of view. My obsessive hobbies that became intense, then overwhelming. She saw through my past, my psychological 'issues' and focused on the behaviours that kept repeating themselves. As I look back on that now I find it hard to believe a diagnosis took so long.

I was diagnosed by Professor Digby Tantum at a place in Sheffield. I can't remember the place but I remember that Leona Lewis's cover of Snow Patrol's Run was playing on the radio. I still find it difficult to listen to that song. It was an unassuming building, not hospital like in it's appearance, more like an office. Inside it had that distinct 'hospital' smell that all NHS buildings seem to have. Clean, sterile and a little unsettling. 

Prior to this appointment by mum had received some forms to fill in regarding my behaviour. They asked about how her pregnancy and birth had gone, how my behaviour was in early years and how it had changed in adolescence. I was taken to speak to Professor Digby Tantum alone at first, I think it was probably an option that I could have someone accompany me but I tend not to in situations like these. I don't like talking about upsetting things in front of my mum. I don't like to upset her, I suppose it's me trying to protect her. After I had had chance to speak, answer questions and explain a bit about my thought processes my mum was called in for her interview. I was allowed to stay for that. Professor Tantum spent a long time talking with us and building a picture of my past, my current mental state and my thoughts and behaviours. We were told there and then that I had definite Aspergers. Mum instantly burst into tears, a mixture of sadness and relief. After 10 years undergoing various forms of therapy she felt a sense of closure, she felt seen and heard at last.

My initial response was incredibly muted. I think the whole process had rendered me a little numb. I wasn't surprised that I had received a diagnosis. I knew it was coming having read the diagnostic criteria. It finally answered the question 'why can't I make this better?'  I finally knew why no matter how hard I tried I kept coming back to the same place, paralysed by fear and unable to function in normal society. The 10 years I'd been trying to 'get better' had actually been 10 years destroying my self esteem and punishing myself for being unsuccessful. Now I could stop that. I'd finally been told it wasn't possible to get better. There was no cure, no treatment or therapy that could make this go away. Now I had to learn to live with it. Which was incredibly hard. 

The first step of the journey had taken ten years. My self esteem had been damaged beyond repair. The coping mechanisms I'd adopted to deal with my undiagnosed autism had become counterproductive and dangerous. I'd lost jobs, friends, relationships and almost my family. We were hanging on by a thread. Yes, diagnosis had answered many questions but it had raised plenty more. I was now an autistic person, something I'd never been before. I know that the autistic behaviours I exhibited had been around since birth but I'd grown up 'normal'. Now I had a diagnosis I was faced with a long, emotional and painful journey into acceptance. 

 Thanks For Reading 

Katrina Fox UK based parenting blogger. Writing about Coeliac / celiac disease, Aspergers Syndrome and Autism, Pregnancy, Parenting and both Childrens and Adults Books
Please see my sidebar for details of where this post maybe linked.


  1. Well done for getting your diagnosis....I am sure it made so many things make sense but I guess doens't make up for the pain that would have been caused from struggling through life up until then without a diagnosis. How did it change things from that point on? Thanks for linking up to #ForTheLoveofBlog.

  2. I too have asperger, I was lucky my teacher got help and got diagnosed when I was 10. But I can realte to all the feelings in this post X #fortheloveofblog

  3. Thank you for sharing - this is so interesting to read. I'm so glad you got the diagnosis eventually but it's so awful how many girls get missed for so long.#fortheloveofblog

  4. I read this with the eyes of a mother currently starting the assessment process for her own daughter (aged 6) I found it so interesting that you said your self esteem has been eroded by not knowing why you felt that way for so long. This is my concern for her so I am pushing as hard as a I can for an assessment. I feel like once we know for sure we can support her more effectively and in the meantime we are just focusing on building her self esteem everyday. Thanks for sharing #MischiefAndMemories

  5. Oh wow Katrina - that's a terrible 10 years to go through. I'm so glad to hear that you finally did get a diagnosis and things fell into place. It's so frustrating to hear how long it can take for an assessment to be made- and all that time going past when support could be in place. Thank you for sharing your experience on #mischiefandmemories xx

  6. I hope this post helps other people with Asperger's and their families to understand the process required for a diagnosis. Thanks for linking up with #MischiefAndMemories


Thank you for supporting me on my journey to raise awareness about mothers on the autistic spectrum. We do exist, we just need people to know we do!

Popular Posts