Category Archives: Parenting

24 Jul ’13: The day after… a generation on

My 4 year old daughter has now officially been diagnosed with High Functioning Autism (Asperger’s Syndrome).

It feels like an eternity since my husband first suggested she might be on the autistic spectrum. I fought with it then, went straight into denial and refused to believe it, but the signs simply wouldn’t go away.

At some point I reached an acceptance. Perhaps it was one meltdown too many? One more day of being driven nuts by her stimming? One more incident where she clearly hadn’t understood a child’s non verbal communication? Or perhaps it was after some innocent exploration of genitals with another 4 year old boy? I think the latter, most likely. Especially when it was blatantly obvious, when they were discovered, that he was ashamed (and therefore realised he shouldn’t have been doing it) and she was blissfully unaware. Genitals, arms, knees… they’re all just interesting body parts to her. It seemed to be the start of my worst nightmares coming true (see my previous blog if you’re wondering why).  A few more similar incidents at her playgroup had me nearly beside myself with panic. It wasn’t panic that she was unsafe, I knew on an intellectual level that it was just innocent curiosity and that playgroup leaders would make sure nothing got out of hand. No, this was a tidal wave of irrational terror that history was repeating itself.

I knew I had to do it. I had to enlighten her to protect her. She needed to grow up understanding her differences, celebrating them and being aware of her unique vulnerabilities. She needed a diagnosis. History was NOT going to be repeated.

The months that followed were hard. Collecting and documenting evidence. Fighting maternal instincts to see only the wonderful greatness in her, but knowing the only way I could protect her was to expose her weaknesses. Put the spotlight on her vulnerabilities. From the moment my daughter was born, my motherly protective instincts, far from being likened to those of a mother hen, have often been likened to those of a lioness guarding her cub. Woe betide anyone who even so much as looked at her wrong. For me to now be the one betraying her by exposing her every little flaw went against everything I felt, everything I wanted for my beautiful, precious angel. But even still, I knew it was better to do now than later. Every year that passed would make it harder. She’s smart. I was smart. She’s already learning to mask her difficulties. I learned to mask my difficulties. She’s already starting to buckle under the strain. The stims were getting worse, the nails were bitten right down and she was starting on the insides of her cheeks, the spinning and humming was getting out of control, her stammer was getting much worse, the repetitive routines were becoming more pronounced and her need to control everything and everyone around her was becoming a huge problem.

The diagnosis process itself was relatively straightforward. From the very first meeting, it was strongly suggested to me that I learn all I can and treat her as though she already had the diagnosis. I think things started to improve. She didn’t seem as stressed. Her social skills improved. I worked tirelessly with her, scaffolding her interactions with her brother and her friends. I took as many opportunities as I could to observe her at playgroup and help her navigate some of the group dynamics. I printed useful information for playgroup leaders and took time to explain to them where she was struggling so they could help her too. I almost convinced myself I’d been mistaken all along, that she wasn’t autistic after all, it had just been my imagination.

Then the final multidisciplinary assessment took place, with the pediatrician, clinical psychologist, speech and language therapist and play therapist who had been conducting individual assessments with her through the previous months. As the session progressed, it became clearer and clearer that they had all come to the same conclusion. Seeing the boxes ticked on the pediatrician’s criteria sheet and hearing her explanation of my darling daughter’s quirks, and how they meet the criteria, sent me into the start of an autistic meltdown. I don’t have meltdowns very often. But I’m now noticing the warning signs… saliva disappears first, followed by increasing loss of vocabulary (I can describe lost words and say what the first letter of each is, but I’ve lost the connection to the actual words themselves), then I go mute, prior to complete shutdown, where I simply can’t process any more input. Voices and background noise merge and cause a stabbing sensation in my head, I can no longer hear anything being said and need to escape to a low sensory environment where I can use my stims to calm my overaroused central nervous system. I couldn’t understand why the meltdown was triggering – I wasn’t afraid of the diagnosis? Or was I? Later in the car park it started to dawn on me. Of course I wasn’t afraid of her having a diagnosis, I was afraid of her having aspergers. I was remembering the darkness of much of my childhood, the abuse, the misunderstandings, the loneliness and the fear. That was everything I didn’t want for my little girl.

Yet again, it was my new aspie community who came to the rescue. A couple of panic posts resulted in some immediate support:

My post:

“Just finished my 4yr old daughter’s final evaluation – high functioning autism/aspergers. So overwhelmed right now. Shaking. Relieved to have it, she can now get support and won’t just be labelled naughty at school, but oh so sad and I don’t know why? Don’t want her to go through all the shit I went through.” 

Some responses:

“Congrats to you both, may her journey be smoother and filled with love, support and understanding. Keep positive” 

“Love & Hugz.. Both times my kids got an autism diagnosis it almost felt like someone punched me in my stomach. Even though in our hearts we know, there is just something so emotional to hear it from the mouth of a professional. I still have the same feeling when I read their evals. It does hurt, it’s okay to be scared.. okay to be worried. Your Mama bear and it’s your job :/ If you need anything feel free to message me.” 

“That’s great that she got a diagnosis! She’ll have access to so much more now and it’ll help give her the tools she needs to have a better opportunity than we had. The most important thing anyone can give her is understanding and no one can give her that better than you. My son is already doing amazing because of the diagnosis which opened up a lot of services. It’s okay to feel sad! You know what it’s like, but she’ll have it so much better because she’ll have you to walk her through it! Hugz!” 

“Their experience is VERY different to how ours was. Be forgiving and gentle of yourselves for a year or so until you start to view all this as ‘just life’ instead of a full-on thing. There are many ways of finding like friends these days instead of randomly leaving them to fend for selves at school. (Hug). “ 

“Really pleased that she’s now eligible for support. Hopefully, she won’t go through even half of what you did as I bet you will be an amazing advocate for her needs”

***

Once again my aspie ‘sisters’ have helped me get things into perspective. Then I realised, beyond everything else, my daughter was going to be ok. She was an Aspie. Aspie females are incredible. They’re strong, loving, honest (to a fault! Lol), loyal. They won’t send you on a date with an asshole just for a laugh, they’ll tell you he’s an asshole! And suddenly I knew what I needed to do. I need to help her find her own equivalent set of Aspie ‘sisters’ to share her life with as she grows. People who would truly ‘get’ her, see how amazing she is and match her in faithfulness, intelligence and authenticity. And with this thought came the realisation that her crazy, creative, quirky, wholesome Aspie genes are probably the best gift in the world I could have given her.

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