Wednesday, 29 June 2016

The trouble with invisible disabilities.

Like most of my blog posts, this hasn't been planned at all.

Like most of them, an irritating event has triggered a need to write this. Someone (who shall remain nameless) in a position where they should (in my opinion) have a good understanding of invisible disabilities and their effects, made a breathtakingly stupid comment a few days ago.

It has made me consider the trouble with invisible disabilities.

And, well, they're invisible, aren't they?

That's the problem. Certain people find it very difficult to get their heads around the fact that invisible disabilities are There are no obvious clues.

As much as we have all read about some disabilities being invisible, unless you live with it, there's still an assumption that you can somehow tell, hence the number of people saying "well he doesn't look autistic".

PDA boy apparently doesn't look autistic, he doesn't show stereotypically autistic signs in school, and when discussing his support needs the other day, in comparison to children with more visible disabilities; physical disabilities and severe learning difficulties, I was told that PDA boy simply needed to make more effort.

In one sentence, this person has, beyond shadow of a doubt, proved that in order to believe PDA boy's diagnosis, she needs to see its physical manifestation within the confines of school, and until that point she will stick steadfastly to her (wrong) opinion that the extent of his difficulties are because he's not trying hard enough.

It is entirely possible that SEN training in schools leaves out masking, so when teachers and headteachers are informed by parents that their child is having significant problems, they simply don't understand, but when they have information provided again and again, it's very difficult not to take it personally that time and time again this information is ignored. And in ignoring, I feel they are making a choice to fail the child.

I don't know one parent who would go to the effort of advocating for their child's needs if it wasn't 100% necessary. In my day to day life, the need to fight for my son to be understood is the single most frustrating thing I have to do, and I consider that banging my head against a brick wall would be altogether more rewarding.

Having a child with an invisible disability opens up a whole can of worms.

The child has greater expectations on them. Despite their autism, because they can hold it in and appear neurotypical, or because any behaviour they show is easy to mistake for NT naughtiness or silliness, they have neurotypical expectations put upon them which simply cannot be coped with and can spell disaster for an individual child.

Parents are wide open to judgemental looks and comments, and even when dealing with professionals who know about the child's diagnosis, there is still largely an assumption that the child has not been disciplined or parented effectively.

When a child has a physical disability, schools must cater for their needs. A local school put in tremendous effort to make sure life for a newly disabled pupil was as easy as possible, that this young person could continue with her education despite life changing injuries following an accident, and they must be applauded for this.

When a child has an invisible disability, the work involved for parents to even have that disability acknowledged, let alone supported, can be a time consuming nightmare.

Some schools get it right. Some schools spot the potential information resource in parents which they can use to their great advantage. Again, these schools must be applauded. They should be held up as shining examples for others to follow their lead.

Unfortunately some schools do not get it right, parents are relegated to being simply Mum and Dad, irrelevant bystanders in proceedings, with no useful knowledge to share. I don't believe this is done deliberately, it is difficult to make that attitude shift from naughty child to child with support needs, especially if you can't see those needs.

We need a whole new approach to invisible disabilities, these pesky conditions that you can't see, and I have an idea.

No, it's not writing the child's diagnosis on their forehead so it's clear to everyone.

It's a radical idea.

When a child has a disability that is not easily observed, there needs to be a willingness in every school, for every one of our children, to involve that child's parents, who are likely to know the child inside out, and to be open minded enough to understand that what you see isn't always what you get. Seeing isn't always believing.

Diagnoses are not handed out like smarties, so if a child has one, it must be respected, whether it can be seen or not.
If a parent is desperate enough about their child's behaviour to involve outside parties, talking to teachers, asking for referrals, there is a good chance that, for whatever reason, that child has difficulties and it is important to take those difficulties seriously for the sake of the child. To deny support or to ignore a valid diagnosis is to fail that child, and no teacher should be choosing that route.

Involving parents is likely to mean that, as the child's needs are met more effectively (and in PDA boy's case, I've mentioned before that this support would be minimal, require no training and, perhaps most importantly, would be free), behaviour from those individuals improves and their academic ability may improve as anxiety lessens.

Everyone's a winner.

How we get to that point of understanding, well, I'm still working on it.

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