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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