My Daughter

I feel strangely at ease with yesterday’s conclusion. If anything, I was actually hoping for a positive diagnosis. Something to explain the last 12 months at least. But I’m wondering if I’m seeing this as a peace offering to my eldest, who was diagnosed 18 months ago, and called his sister “the smart one” of the three. The Golden Child. Something to ease his pain of feeling different. The one who always seems to have something to make him the odd one out; food allergies, auditory processing difficulties & now Aspergers. No longer the only one. Or was it hope of a hint that it’s even more likely that I too would be aspie? I wanted to sacrifice myself right from the start as being his aspie connection, companion, example (whatever that may be!). Or, was it conviction that this path I’ve been dragging everyone down has been correct? That It hasn’t all been for nought.

Surely not. this was about finding answers to what caused my daughter’s wheels to fall off this time last year. But it didn’t provide the shock and devistation my son’s diagnosis did. My daughter and I had been talking candidly about it for at least 9 months, with her asking if I thought she was and me saying no, but it would be good to find out, just in case, so as to get some direction/answers. She’s very insightful, and can talk intelligently about many things. So, discussing Aspergers regarding her older brother and later, referring to her own possible diagnosis, was easy with her.

But, despite the ease the end result came with, I found my hands uncontrollably shaking as I drove in to the clinic, when I went to the bathroom as soon as I arrived before our appointment and as we chose our seats in the consulting room. Shaking, reminding me that I was scared. That this was big. Life changing.

Outside the clinic’s office, after our appointment, my husband had the same response as last time: standing halfway between the automatic doors and his car. Angry. Angry that it seemed so flippantly handed out, that “yes, your daughter has some traits and therefore most likely has Aspergers”.

“Do they say this to everyone? ‘Hey here’s some for you, and yes, you too can have the diagnosis!’ This is their business, it’s in their interest to of course say she does!! It can be presented in such a way that EVERYONE could be given the diagnosis; all the different traits, all the different possible options, anyone could fit the profile”. All I could offer to ease this direction of doubt for him, was that if the clinic was benefiting by giving positive diagnoses, then there would be follow up sessions, products, books, courses, counselling etc. but if anything, we’d found it hard to get more from our son’s specialist. He was there if we wanted, but he certainly wasn’t chasing us down for more … anything!

It’s a bit like the grieving process, being told your child has a life long disorder that makes them different from other kids, with (most likely) difficult times ahead, where you first experience denial. Refusing to see how the diagnosis could possibly fit. Seeing too many holes and vagueness in the diagnostic description to completely form a true diagnosis. Is this really your child? You were able to see so many potentials for them, dreams you don’t want to throw away. And you grieve for the future you hoped they would have.

We wrestled with our son’s diagnosis for at least 12mths. I could see traits that could be ticked, but didn’t feel all the 3 core traits (Impairment in social interaction, impairment in communication and restricted interests and repetitive behaviours [www.autism-help.org]) were there in order to actually have a true diagnosis of Aspergers. My husband just didn’t see any at all. But, 12 months down the track my husband says he can now see that it fits, I do too, but still occasionally waver back to uncertainty. However, We have resigned ourselves and reached acceptance. Another stage of the grieving process?

He spun on his heel and strode to his car without a goodbye. He was pissed off. I was parked out the back, so had to go back into the office to get out to the car park, and was suddenly back in reception with the receptionist and our psych who must have just witnessed this moment through the large glass doors. I felt uncomfortable. Probably a common occurrence; a brief registering of what has been handed you, not yet time to process what it all means. Just raw immediate emotion.

My husband rang me 30 minutes later. His mind having spun over, worried about telling our daughter. Worried about what impact it could have on her. A Life long label that doesn’t sit well with him. This isn’t his little girl, she isn’t all wrapped up in the mystery of Aspergers, surely! But, after some pre rehearsed words, I told her. Simply that there are some traits, (the anxiety, school refusal, sensory sensitivity) & so its likely that it’s very mild Aspergers. As the psych said, she doesn’t present as your cliche representation, not quirky, but instead, internalising her struggles and hiding what’s going on.

That night my husband said after we went to bed; “It’s probably my fault. I’ve done this to them. I’m a bad father”. Me; “You can’t make someone have Aspergers. You know they’ve probably inherited it from me”. “You don’t know that, it could be me”. I put my arm around him as a feeble attempt to comfort him and show we’re in this together. “You don’t need to do that… It’s too hot to have your arm around me anyway”. So I rolled over and curled up into the foetal position feeling numb and waited for sleep to get me.

I must have drifted off, as next thing I knew, I was being woken by our youngest climbing into bed with us. The storm outside also woke our daughter, who, not long after, also stood beside my side of the bed at 2am, muttering to be let in. With no more room, I followed her to her bed, got her a glass of water and slept in her bed with my arm that didn’t fit onto it tucked in underneath me so as not to be tipped out with it’s weight.

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7 thoughts on “My Daughter

  1. she doesn’t present as your cliche representation, not quirky, but instead, internalising her struggles and hiding what’s going on.

    We were talking at my autism group on Tuesday about how women are less frequently diagnosed than men with autism and that they may be better socialised into hiding the symptoms or dealing with them. Although I’m not a woman, I do feel that if I am genuinely on the spectrum, that’s where I fit too, which is why it’s been so hard to get myself diagnosed.

  2. Yes, you’re so right about girls being quite hidden. Our concern is tho, that the psych assessing her made assumptions about it being hidden rather than searching for it. If that makes sense?!
    Regarding yourself; perhaps now being an adult, you’ve learnt tactics and ways to hide traits etc along the way? I believe that’s why adults can also be difficult to diagnose as well. So I think you could be right there!

  3. I think what you said makes sense, that the psychiatrist assumed she had hidden symptoms rather than searching for them.

    Yes, I do think that I’ve learnt coping strategies, which makes it hard to see them. Although as a child things were also unclear in some ways, because one psychiatrist spoke to my Mum about my childhood.

  4. I was in the situation where I wasn’t gonna get diagnosed with Aspergers and they just thought that it was just that “hard knock part of life” I was going through after graduating from high school 2 years beforehand and not being able to make new friends in the real world, while my school friends dwindled from connections as I had nothing in common with them but they were in my life for the company.

    My answer is that you don’t have to keep that label in your mind forever for both your children and yourself 🙂

  5. Thanks. I agree with you there.
    I’m not a actually worried about the label itself, but rather, is it correct?
    Thanks for taking your time to read my post and commenting.

  6. My older daughter was diagnosed ADHD Inattentive and believed NOT to be autistic, therefore they would not even consider testing her even when her sister was diagnosed and I was suspected Asperger’s (at the time, now officially confirmed). Two years ago, they still refused to take our concerns seriously. Last year they actually had the decency of at least making a “pre-screening” and lo and behold, they found that the “red flags” were all over the place. They still tried to refuse testing “because at least she had one friend”! We took her elsewhere and she was tested and diagnosed!

  7. That’s crazy they refused! I’m glad that you’ve now got the correct diagnosis and can move on with the right supports in place.

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