It matters

I wonder, if she had been a boy, would Bean have been diagnosed at a younger age because her symptoms might have been all the more evident? How much more apparent would her symptoms have needed to be back then for her behaviour issues to gain acknowledgement? There was, after all, that Jr. kindergarden teacher at her first school whose parent/teacher meeting with us left us taken aback and shocked as she described, in such an exhausted and exasperated way, our daughter’s bad behaviour in her class that we left wondering just how “bad” Bean could really be and what could a four year old possibly have done to upset a teacher so immensely!?

That teacher, with all her frustrations and obvious dislikes of Bean, never suggested that Bean might benefit from going to see someone to be assessed. Yet Bean was one of her biggest challenges in that class. At the very least compared to all the other little girls in that class, but very possibly even above the little boys of the class. So why didn’t any red flags go up for that first teacher or for us? Why, instead of questioning whether Bean might have some real and serious behaviour issues, did that teacher just write it all off as Bean being extremely head strong and energetic? Why did we accept that and never question any of it?

Well our excuse is, as mentioned in a previous post, that we had innocently believed her regression and defiance to be solely due to the big changes in her life > gaining a new sibling and starting school for the first time. (As far as transitions go, those are big ones for anybody – so these were absolutely the cause of much stress during that time). We assumed that she would adjust as others tend to do. By Sr. Kindergarden we started to see a very strong and definite shift in her actions and reactions to stimuli and social situations. Though by Sr. Kindergarden her ‘bad behaviour’ was becoming more of an at home thing then an at school thing. In fact the more she seemed to ‘act out’ at home, the less she appeared to do so at school. As if she was living a double life and we were getting the short end of the stick.

But if you ask me, the teacher’s reasoning for missing the signs were because she never looked for them. People so rarely look for, or consider, ASD’s and ADHD in little girls that they often completely miss the very obvious symptoms right in front of their eyes. ‘They’ (yes the big generalizing ‘they’) follow the numbers that say that girls are less likely to be affected by these conditions so the behaviour must be other things. And little girls, as we all know, are ‘supposed to be well behaved’, therefore they are socially wired from a very young age to do so to the best of their ability.

That first teacher once mentioned to me that Bean refused to speak French so vehemently that in order to ‘make her’ she stopped responding to Bean’s requests. Instead she would force Bean to find a solution to get her needs met, like going over to another student and asking them how to say something in French so she could ask that teacher something. I feel two ways about this, one is that forcing Bean to come up with solutions and to socialize with her peers was probably a good thing in many ways. Second is that there could have, must have, been a better way – a way that didn’t make her feel singled out or ‘dumb’. Asking the question “is it difficult for this child to learn this language?” and “why is it so difficult for this child to learn this language?”. But instead Bean was ignored and so she stopped asking the teacher for things. This wasn’t enough evidence for that teacher to tell there was something more at hand here. Even though Bean could never stay in her place in line or stay quiet or seated for long. Even though she didn’t always “hear” the teacher or other children when she was spoken to directly or make good eye contact with people when they addressed her. And even when she absolutely *never ever* spoke French in that completely French school even when the teacher refused to communicate with her – even then! Since Bean wasn’t actually hitting the other children or destroying school property > since she wasn’t talking back to the teacher or running wild, that very frustrated and spent teacher summed it up to Bean simply being a difficult child.

In other words a brat.

So yes, instead of taking notice and ‘dealing’ with Bean’s issues, she was ignored. For her own good of course. (That was sarcasm, in case you missed it.)

And because her issues were written off as her being a little needy-cry-baby-know-it-all who was just looking for attention, she slipped past us all and into the crowd. After that first Jr. Kindergarden teacher she learned to blend by mimicking her peers and making friends with her teachers. Much like I did as a child she adapted scripts she knew made her ‘cute’ and ‘funny’, and people told her so. She became a chameleon, and she was good at it.

After that teacher Bean started ‘behaving to the best of her ability’. Like all little girls should. At least she did at at school.

It stands to reason that If she didn’t have ADHD we would never have even discovered that she is autistic. We, like the rest, would have simply ignored those other symptoms signing them off as ‘over-sensitivity’ and ‘stubbornness’. Maybe not, and I hope not. But a very probable second ending might have never been written here if things hadn’t gone the way they had. It was her ADHD that stood out. Not to everybody – in fact to nobody – but me. But I was insistent. I saw the shift in her back in Sr. Kindergarden. I questioned why she refused to speak French at school when she tried so hard to speak it at home. I heard the dislike in that teacher’s tone when she described my kid as a student in her class, and that wasn’t ok with me. I didn’t believe that my kid was just a stubborn, over-sensitive attention seeker. So I pushed past the “I don’t see it” and “you’re just looking for something to be wrong with her”. And I got her assessed.

Maybe it’s because I saw myself in her. A little girl lost.

The truth is that unfortunately being ignored and excused is a very probable outcome for many young girls on the spectrum who do go undiagnosed because their symptoms (not being “obvious enough”) get shoved aside and excused as ‘over-sensitivity’ and ‘stubbornness’ and/or ‘developmentally immature’, ‘learning disabilities’ and even ‘shyness’. Yes, ‘shyness’.

Sad but true.

Could you imagine living in a body that was intensely uncomfortable in some situations, in a mind that needed a different way to learn things but nobody tried to figure that out for you? Could you imagine that the way you reacted to these things resulted in you being critiqued and ignored? That because you didn’t react as strongly as a little boy who has AS or ADHD, you were passed off as being ‘over-sensitive’ or a ‘drama queen’? Our prototype of an autistic child is so strongly based on how a boy presents the condition that even in a class of ‘neurotypical’ children that little girl with autism may very well be as easily missed as if she were sitting beside someone who was much more ‘obviously autistic’ than her. I can say this with certainty because when I told Bean’s teacher’s and Vice Principle about Bean’s diagnosis I was met with disbelief and doubt. The Vice Principle even went so far as to tell me that she taught children with AS and Bean was nothing like them. Then she explained to me what AS “really looks like” in a child. When I asked if she had taught any girls with AS she said no, but added that “gender didn’t matter – the condition is the same”.

Nope. It isn’t. And yes, it matters.

It matters so much that here I was trying to convince her of Bean’s Asperger’s when I was just coming to terms with it myself. And that having to convince her meant that I could easily see a difficult road ahead at receiving resources and acknowledgment from that school.

It matters so much that because she wasn’t diagnosed till she was 8 years old we lived with extreme stress in our home life for the past 4 years, having no idea what was going on with her or how to deal with it. How to treat her the way she needed to be treated. How to understand her better.

It matters so much that if it wasn’t for Bean’s ADHD and our perseverance to get her officially diagnosed by a notable Mental Health facility (in order to gain all the possible resources available to us) we might all have continued to suffer along, not understanding what was going on with her or how to help her.

Yes It matters… It matters because it doesn’t matter that girls often present differently. That doesn’t mean that their autism is ‘less than’ or ‘more mild’. In fact, not being treated because your condition is apparently invisible to others, can be extremely detrimental. Causing many young women extreme anxiety, low self-esteem and often to become severely depressed.

It matters because if we had known, if others had seen the signs and helped us to see them too, we could have welcomed autism as a part of our lives long ago, when she was younger and not so concerned with what this all means to who she is. It would have just been, and that would have normalized it. All of it. The peer groups we are going to send her to, the workshops for the hub and I that we are planning on attending. The walks for Autism I plan on us going to with her…it could have all been part of our life by now if she had only been noticed not as a brat but as a child in need of assistance. Of understanding and acceptance.

It matters because their disbelief and pishaws imply to her that this is a bad thing. Where once she felt neither here nor there about being told she had AS, now she feels ashamed and outcast at a time when what we need most is for her to embrace it, or at the very least go back to not even thinking twice about it.

Nobody seems to realize that she hears everything, perhaps it is because she always seems not to be listening, to be far away in a World of her own. But she hears everything, and although she doesn’t express her concern or hurt the way they need her to for them to recognize their own ignorance, she tells me in her own way. And I’m not sure how to fight this battle. How to conquer her shame and embarrassment. How to convince her that nothing has changed for the worse, only for the better and that she is still the same sweet Bean that she’s always been. And that that same Bean has always been autistic, we just didn’t know it then.

Yes it matters. It matters so much.

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Filed under ADHD, ASD is more than what you see, Asperger's, Aspergirls, diagnosed, girls versus boys, Transition

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