Tag Archives: children

“Presume competence”… but not for autism specialists, professionals, teachers

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meeting at the school today…

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Yeah, not so sure about this day.. The meeting was incredibly awkward, I felt that the suspension was as much meant as a “wake-up call” for me as for Nemo. Which might be necessary for some parents, but I am kinda ‘all over it’ already, at least as much as I personally can be (because, you know : life). In brief, I felt judged and the whole ‘formalisation’ (reports, letters, behaviour contract) made me feel like it has more effect on administrative, and possible legal, follow-up (in case of what ?) than actually being efficient steps towards handling the situation (ie managing anxiety and anger).
Having had some really sad news the night before (re: life..), I really couldn’t say much at all.
But I told Nemo that I loved him, no matter what.

On parenting.

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This is really just a side note on parenting in general. We are currently in the longest holidays if the year, it’s hot (remember, Australia),and I have limited budget for outings and stuff.
6 intense weeks, not every day is bliss… Why lie about it..?
I mean “autism parent” or not, apart from all the bliss, this parenting gig can be hard work, frustrating and incredibly frustrating… It’s all part of it. 🙂
That’s also why it’s so great!

snake oil in the new millenium

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I have vague memories of court cases in Europe, in the 80s. Greedy, unscrupulous quax had taken the last money from desperate parents of children suffering from cancer, providing them with completely absurd – and totally inefficient – treatments or ‘cures’.
I always thought those were despicable crimes: profiting of the fear and desperation of others, potentially pulling them away from actual medical treatment or at least relief and rest, and even inflicting further, unnecessary pain to a victim who often has no say at all.
Desperation makes people do a lot of crazy things.
But it still shocks me every time, when I read about the incredible and monstrous treatments that some people inflict on their own autistic children, 30 years later. It has to stop!

“Taking off the edge” ? – Autism and medication

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First of all: I am not against medication to help dealing with severe and debilitating mental issues, like depression or bipolar disorder, but also anxiety, PTSD and other stress related illnesses. And these can all be comorbidities of autism. So can ADHD, which I believe is increasingly diagnosed in autistic children. Medication can show good results, temporarily or long-term with all of these conditions. But when this was basically the first and ONLY therapy my paediatrician proposed, on “diagnosis day”, I was just disappointed. There is no ‘autism pill’, right? I think his duty would have been to tell me how to start HELPING my son, what to change at home, at school, to adjust expectations and methods, to help my son thrive! Instead, I went home with the my son’s TRIPLE diagnosis of ASD & ADHD & ODD, a lot of questions…and a recommendation to buy fish oil.

autism in the media–news show snippets

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Autism is more and more present in the media. There are movies, tv series,  documentaries of all kinds… And then there is the odd ‘autism snippet’ on news shows on commercial television. It seems they are all follow the same pattern:  “this family wants you to see what their life with autism really looks like” – cue: screaming child wreaking havoc in the house. Parents talking about how hard it is. For them. Then, briefly some expert : “The causes of autism are not fully known…” (oh snap!) “..early intervention, ABA..” “high costs..” (critic of governments service schemes, ok) and THEN either “new hope for early detection” (in infants.. or before birth, usually VERY early studies..) OR – aaargh! – “the debate continues if autism is linked to [insert scientifically completely debunked autism myth here]” and maybe even room for some self-declared expert quax to deliver their spiel.
Total time: usually less than 10 min. My personal learning experience : zero.
Effect on the broad public : Autism is mysterious and totally scary.

When others “totally understand” your kid’s autism…

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I had prepared this comic for a while, but hesitated to post it. I think I try not to be too confrontational with real life people… Not only about autism, about anything. I kinda had my share of conflicts in life and know some are just not worth the effort. Like this one? See, my answer to her was “It’s ok. I understand“, something like that. But in reality, I was incredibly hurt. It wasn’t the first car we were passengers in. When the driver actually sets some rules from the start, it usually works. But mum and her kids were completely mute and not exactly welcoming to Nemo. It was a short ride but it WAS uncomfortable. She knew about his autism for long, also worked in education. She “totally” understood ?