2 Jun ’13: The day after

Yesterday, an 8 month long process of evaluation ended with the news that I have been officially diagnosed with Asperger Syndrome, an Autism Spectrum Disorder.

Looking back, I can now see a lifetime of signs that were missed; from twirling, humming, rigidity and obsessive interests to being bullied, eating disorders, depression and loneliness.

But why bother having an official diagnosis now, at this stage of my life, when a self diagnosis would have been enough?

Because Asperger Syndrome is hereditary.  My daughter is showing some traits and I can’t bear to watch her tumble and fall into the same black holes.  The sad fact remains that the current diagnosis criteria for Autism Spectrum Disorders, worldwide, is wholly based upon research with autistic males, who present very differently from autistic females.  Until more females on the spectrum are diagnosed and prepared to add their voices and experience to the pool of knowledge available, many more (particularly high functioning) autistic girls and women are going to be missed (or misdiagnosed) and continue stumbling blindly along in life wondering why they feel like they are on the wrong planet.

But that’s not the only reason.  I seek confirmation, validation.  Discovering I have Aspergers Syndrome has finally answered all of my questions.  More than half of my life, and a not inconsiderable sum of money, have been given over to extensive research and therapy to find out what is ‘wrong’ with me.  I now know that there is nothing ‘wrong’ with me, I’m simply different.  I perceive the world differently.  My brain is wired differently.  I have difficulties in some areas, gifts in others.  The relief is immense.  As immense as the burden of responsibility I now feel towards my young daughter.

I find myself wondering how different my life would have been if I had been diagnosed as a young child?  Would it have held me back?  Would I have limited myself?  Would I be the same person I am today?  I’m quite proud of many things, especially now I realise how much harder life has been for me compared with the more neurotypical population.  But there has been tremendous cost along the way. 

Do I wish I had been diagnosed as a child? 

Yes.

Next post: To be or not to be…

Other related links

Profile of adult females with Aspergers

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2 Comments

Filed under Aspergers Syndrome, Diagnosis, Relationships

2 responses to “2 Jun ’13: The day after

  1. lostinthelabyrinthh

    Great post, I too agree with you. Females are different than men with Aspergers definitely. A few women I have spoke to agree too. I would love to raise awareness at some point too, I just have no clue how you do such thing. I definitely feel Aspergers is misunderstood & we do need to raise awareness before people are feeling lost in life just because a GP has no idea of how someone with Aspergers actually copes etc. It’s not just as simple as no eye contact because a lot of Aspie’s can look people in the eye for a bit. It’s so miss judged it’s a shame!

    If you want to share experiences feel free 🙂 I am a 23 year old female that was diagnosed at the age of 22. Also wondering if I would of wanted to be diagnosed earlier.

    Maria

    • Yes, Maria, I agree with you that it’s a shame GPs are not more clued up about the differences between male and female presentations of aspergers. The eye contact thing is a red herring, as you say, because many of us have learned ways of hiding the difficulty. I had feedback in a life coaching session about 15 years ago that my eye contact wasn’t good (had no idea about asperger’s then!) but I was so shocked when they said it made me appear ‘shifty’ that I became obsessed with sorting it out. I watched people carefully to see how much eye contact they made and was horrified when I realised just how much! Think I went through a phase of too much eye contact before I settled somewhere in between. I look at noses a lot, or the bridge of the nose and keep reminding myself to look away now and then. It’s hardest when I’m really into the conversation or when I really have to think. Then my eyes drift off and I forget to look back. Such a relief to know I’m not alone with this! 🙂

      There are lots of ways you can raise awareness, for example on facebook, I don’t know if you use that? That’s how I’m starting, anyway. I don’t share as much as I’d like to, but I don’t want to bombard my friends either. I’m studying psychology at the moment and hope to specialise in autism research, particularly looking at how to identify and support females on the spectrum.

      Please do stay in touch, it would be great to hear how you’re getting on. 🙂

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