I sometimes forget that J is SN - he is my only child so I have no comparisons. I guess that's the thing with 'hidden' disability. When he's in a good phase, things can be so lovely. He's never ever dull.
But even in a good phase, I forget how much more he needs than other kids. He can never ever be unsupervised, at home or at school and the level of his Statement, DLA and SS provision reflects that massive extra input I guess. His self-care skills are very minimal, still needs help with dressing, toileting etc. etc. and can only eat with his fingers or occasionally a spoon. And then I remember how much input he's had from so many agencies to reach this stage!
Agree with Peachy that some children with ASD need masses more input than others. It is a spectrum and some have quite mild ASD and will not need more than a bit of extra input on social skills or something. A lot of children on the autistic spectrum need a lot less input than J but then again he has some massive strengths too - nobody beats him on a computer!
It hits home sometimes when I meet parents of other kids, especially ones with ASD, as I always assume that we share similar experiences, but often I realise that, behaviourally, J is extreme and that's where the disability is massive in terms of its impact on his life and mine.
I belong to a parents' group which is working with the local authority to try to re-design the short breaks programme. There used to be two unofficial sub-groups - those with children who had a physical disability and one for those with a mental disability. Initially, you could tell that the divide stemmed from the fact that the people with physically disabled, often medically complex children thought that we had it easy because wheelchairs etc. and the very visible barriers that their child faced each day were far more difficult to overcome than a behavioural/ learning or social problem which seemed more minor or fixable because it couldn't be seen. Equally, some of the ASD children's parents (and those with GDD etc) felt that they had it harder because society could see physical disability, attitudes are better towards it and provision was easier to put in place.
But then I think everyone has realised that we, of all people, shouldn't be competing over who had it hardest, and that we all had it hard in different ways. I did get a bit though when I was talking to a new lady one week about a major 3 hour meltdown that J had been on where he'd destroyed most of the downstairs, actually managed to smash a bottle and try to hit me with it (this is because I'd accidentally deleted one of his numerous Sky+ed episodes of Scooby-Doo) etc. etc..
She was looking at me very and said how awful it must be to be me because she wouldn't have the physical or emotional energy. She said that the numerous jobs and medical stuff is exhausting but predictable and she couldn't cope with an unpredictable violent child like J . Her ds has CP and a rare genetic syndrome (can't remember the name) and is in a wheelchair and I was quite upset actually to see that she felt that about J- still can't quite unpick that now to articulate why.
We've talked on here before about the hierarchy and competitiveness that goes on about SN and I hate it really. I think that we and SS and all the other people who make judgements on level of disability have to take into account the impact on that person's life and those of others around them. What peachy said really. It's about impairment and impact, not the name.