That little ‘A’ label – thoughts on diagnosis

Diagnosis can be a difficult thing to manage. One of the questions I am most often asked when I speak to an audience is ‘when should I tell mu child that are on the autism spectrum?’This always reminds me of my childhood when some children were adopted and their adopted parents knew all along but weren’t sure when to give their child that vital little piece of information about their history. I read a book by one of my favourite authors, my namesake Jeanette Winterson where the young character in her semi autobiographical book Oranges are Not the Only Fruit– which I read when I was about 16 –  found out she was adopted by her biological mother knocking on her door. I remember thinking how odd it would be to discover such a significant part of yourself years after other people diid. For many people, discovering they are Autistic – by whatever means – is a huge, life-changing thing too.

I know adults who were told about their Autism diagnosis in their teens after their parents  got a diagnosis for them at a much younger age, saying how helpful it felt to understand why some of their thoughts, actions and experiences were divergent and more importantly, that many other people occupied the same diagnostic space. I have met adults on the spectrum who had a sibling or other relative diagnosed but whose parents never sought out a diagnosis for them. They then went on to seek out a diagnosis later in life and were relieved when they received it. The decision around whether to seek and then whether to disclose an Autism diagnosis for oneself or one’s child is very personal and individual choice. As with all parenting activities, parents can inadvertently get it very wrong or it can work. Parenting is pretty tricky I think, especially as all children are different. I usually respond to the parents asking me when the best time to disclose a diagnosis to their child that they – the parents themselves – are the best judge of this as they know their child a lot better than I do. It’s hard to parent from a stage with the children in question having never met me and usually being in a  different location!

People respond differently to their diagnosis. Most people I know who gained a diagnosis of Autism  / Asperger syndrome as adults embraced their ‘label’ fairly quickly. It meant they were able to understand why their lives have been so challenging and why there was nothing ‘wrong’ with them, just a difference shared my multitudes of others. For many, giving that difference the name  ‘Autism’ can be liberating and provide an explanation of things they were puzzled about in the past, particularly around social connections and relationships. Autistic adults often embrace their new identity and seek out other adults on the spectrum. Many adults gain a diagnosis shortly after their child is diagnosed. This can lead to closer relationships with children. My own mum has a diagnosis of Autism spectrum condition and it is a good thing.

I have met a few adults whose immediate response to their diagnosis was not a source of joy or relief, however. One of these people is me. I was diagnosed with Asperger syndrome in 1994. I was a prisoner and the diagnosis was almost unheard of at the time. I was told that Autistic women were a very rare thing indeed – one in tens of thousands apparently. This diagnosis probably could have enabled me to make some positive changes and understand m experience in a way which didn’t involved self-hatred or blame. But it didn’t. I was in a space where I was desperate to be accepted and not to be the ‘nerd’ that everyone had hated at school. As a twenty year-old prisoner i was fairly certain I wasn’t a  nerd, so when a nice psychologist came and did an assessment and – to my understanding at the time -told me I had essentially a diagnosis of ‘nerd,’ I rejected it.

I spent years hating that Autistic me, telling myself I wasn’t weird and that I was ‘cool’. I think the key issue for me was that I hated myself. I didn’t accept myself as I was. I would be a social chameleon, trying to be accepted by belonging to different groups or ‘cultures’ (criminals, socialists, drug users etc). It took almost exactly seven years to accept my Aspieness. I was just about to start second year at university, studying for a degree in visual arts. I’d recently had some mental health difficulties resulting in a short stay in hospital. In my social life I had very recently started to realise that people liked me because of who I was rather than my membership of a ‘culture.’ I started to think about my mental illness issues and a thought popped into my mind which said ‘what about that Autism thing?’ I asked my mum to send me the information on my diagnosis – reports and things,. I looked at it and thought ‘that’s me.’

Interestingly, while I accepted the Autism diagnosis I found it hard to discuss it with other people. I knew it was a good thing, but I worried that people would hate me or discriminate against me. It took another three years – and the publication of my autobiography – to be OK with talking to friends about my diagnosis. And now I talk to everyone about it! I talked to 257,000 people about it in documentary a few years ago. I talked to 1300 people (in the same room as me) last November. I have a strong social media presence (or course with a fluid number of viewers over time). Anyway, a fairly large number of people know I’m Autistic and I am very much OK about it. My diagnosis and I are one and the same thing. I am Autistic author, advocate, public speaker, person, sister daughter, auntie, friend, cat lover,  Government official, artist Jeanette. And yes, I put the ‘Autistic’ first, not the ‘Jeanette’ first. This is a choice for me because Autism is such a key part of me.

So we all have our diagnosis journey. Some people are diagnosed and told about their diagnosis at five years old, others diagnosed at five and told at fourteen, others find out when they are sixty-seven. To me it’s about making the diagnosis work for us effectively. For it to be empowering and liberating. To help us be the best us we can be.

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One thought on “That little ‘A’ label – thoughts on diagnosis

  1. I don’t think my son is actually aware that he’s autistic, but only inasmuch as he has no comprehension of what that means (his autism is about as profound as it comes, and has a few undiagnosable – because he’s almost non-verbal – learning disabilities thrown in). He knows he’s different, but he’s also very happy with his life as it is now: he’s nearly 20 and has a round-the-clock care team in his assisted-living flat; he loves Spongebob, Spiderman and Saturday night sausage and chips from the local chippie.

    For myself, I was delighted when I was diagnosed. I was a very “strange” child, and an awkward teenager with an uncompromising temper. To learn that my “psychotic tendancies” (thank you, Mrs child psychologist who barely knew me) were actually meltdowns was such a huge relief. I also don’t feel shunned any more, as I’m up-front about being autistic and embracing who I am; knowing I’m okay with it means people stop feeling that they have to try so hard to make me understand them. As it happens, one of the first friends I made in the city I’ve been living in for the last nine years is a psychologist – and as soon as I said hello he asked me “When were you diagnosed?” – which came as a bit of a shock, but he’s on the spectrum too, and can tell immediately if he’s in the prescence of another autistic person.

    Autistic, geeky and proud. That’s me!

    Gemma x

    Like

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