Aug 012014
 
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A diagnosis of autism is just that. A diagnosis. It shouldn’t need questioning by laymen. A professional has done that already over the course of 12-18 months. The parents have, more than likely, also struggled for many years before that too.

The small parts that others see of my wonderful little man are, literally, just small parts of his life, tiny snapshots, fleeting glances. They may not see anything wrong with him but that doesn’t change the facts. If they saw a physically disabled person sat normally on a couch would they question their disability or the diagnosis because, for that brief moment, their disability doesn’t affect them? And, for all intents and purposes, they ‘look normal’? I doubt it.

But follow this (imaginary) physically disabled person around for a week, or even just a day, and you’ll see the difficulties they face: getting dressed, steps into shops, aisles not wide enough for wheelchairs, toileting, getting into bed… the list could go on and on. But sometimes things look ‘normal’ and their disability doesn’t effect them. Now, follow Mini-MaFt around for a day and you will see just as many difficulties: over-sensitivity (noise in shops etc, taste and texture of food, unexpected smells, the feel of clothing), under-sensitivity (shoes need to be tightened throughout the day, bedding needs to be pulled tight even in red hot temperatures), rigidity of thought (you can’t just change the plans for the day), routine, impulsive behaviour, lack of self-awareness/danger, ‘stimming‘, taking things very literally (“you have to tell your parents to buy you one of these!” – that is now a rule that must be obeyed)… again, the list could go on and on. However, the point is that all these things cause daily difficulties for Mini-MaFt but we’re all getting better at handling situations so that things don’t become a major issue… some of the time.

People will generally bend over backwards to help a child that is in a wheelchair, or to give them a sympathetic smile if they look upset about something. “Oh, that poor child is upset, they must find life really hard with a wheelchair”. It sounds awful, and I know I’m not alone in saying this either (I’ve heard it and read it in numerous places) but sometimes I think it’d be easier if Mini-MaFt was in a wheelchair. Why? Well, I’d rather my child was given caring / sympathetic words and looks when The Big Wide World becomes too much for them than to get snidey comments about bad parenting or spoilt children just because they “look normal” so they “shouldn’t behave like that”.

Even after diagnosis there are lots of parents who hear phrases like “well, he looks normal”, “she’s been fine this evening, I don’t know what you’re so strung up about”, “can’t you control your child?”, “oh, my son does that too”, “are you sure you’re not just making them worse by giving in to them?” and “he’ll grow out of it”. It honestly breaks my heart to hear things like that and it’s hard not to just snap and go off on one. But the fact is, I know that the responses and questions generally tend to stem from a lack of understanding of ASC’s (Autistic Spectrum Conditions) and not from simple rudeness.

However, if there has been a professional diagnosis then please, please don’t question that by hinting that they might just be imagining everything. In fact, even without a diagnosis don’t do it either. None of us are capable of knowing what other people are truly feeling; I know from experience that it’s all too easy to put on your mask and pretend that all is well with the world. As the song in ‘Tangled’ says: “Parent knows best” (OK, so the actual lyric is “Mother knows best” but I needed to change it to make my point). The parents of a child with autism have already spent many years with them, they are with them on a daily basis across all manner of events, experiences and locations – they know their child and how their autism affects them.

Wheelchair users have slopes into buildings because steps would cause problems – this allows them to be ‘normal’ and go places that able-bodied people can go. Autistic people will have routines and techniques in place so that potential problems are bypassed with little struggle before they can become a big issue. Again, this helps them to be ‘normal’. After the years of struggles (both emotional and physical) the last thing they need is to be told that their child ‘looks normal’ because I can guarantee that this ‘normality’ has taken a lot of effort and learning both for the autistic child and their parents/carers.

To use the wheelchair analogy one final time, if you see a wheelchair user inside a shop coping perfectly with choosing some new clothes then would you question their disability because they can obviously manage to be ‘normal’ and do ‘normal’ things like shopping? No, of course not – you’d see that they’re in a chair with wheels to help them move, you’d see that they had a slope to help them get in the shop, you’d notice wider aisles around the racks of clothes, you’d notice lifts between floors and you’d realise that all the little extras are what helps this person live as ‘normal’ a life as possible. It’s the same with autism, although the problems and the solutions(?) are invisible – you can’t see autism and, in general, you won’t see all the work and effort that goes in to caring for an autistic child: the social stories, the advanced planning, the self-control, the learned social behaviours etc. So when you see an autistic child ‘looking normal’ then please remember that, just like with the slopes and lifts, they’re able to look ‘normal’ because of all the extra things that are in place to help them – and not simply because their diagnosis is wrong.

I’m concious that this has ended up quite long and, so, in a nutshell… Autism or not, just remember this:

battles

 

For more information on autism and Asperger’s please see the many amazing resources that the National Autistic Society produce.

 

Post Scriptum: This video got shared with me in between writing this post and publishing it. I thought I’d add it as it’s a good reminder that those who pass judgement are, in fact, the minority.

 Posted by at 2:30 pm