DS is 5yo with a preliminary diagnosis of 'high functioning autism', I don't like the phrase high functioning but it's what the paediatric team have used in their report. They're unable to complete the diagnosis as he was 5 last month so has to be transferred to CAMHS however CAMHS won't assess him until he is 6 so he has someone from the school health team periodically monitoring him until then.
It's been suggested we apply for DLA even though he doesn't have a firm diagnosis. Our older son gets this but he was diagnosed before we applied, the paediatrician said that he doesn't need a diagnosis though as it's based on his care needs.
I feel like he does need more care and supervision than other children his age but at the same time I find or hard to judge whether that constitutes applying for DLA.
He has very limited eating habits, there are only around a dozen foods he will eat and these have to be cooked and served according to his rules. If the rules aren't met, he won't eat and will get really upset and angry. He sees a dietician and has to take a specific multi-vitamin to cover everything he's missing in his diet.
Because of his limited diet and because he doesn't like the sensation, he has problems.with toileting. He regularly soils himself and doesn't tell anyone, this was happening at school as well as at home. It gets worse when there are changes in his routine or when he's particularly anxious. He has to be regularly checked, especially if he's showing signs of withholding a poo (weeing lots, smelly farts, etc.), and cleaned up as needed. He won't help with clean up, won't wipe his own bottom, and has to be persuaded to sit on the loo. He takes daily Movicol. He won't dress himself except for very rare occasions and will stand there shoving clothes at me until I do it. When he does do it himself he gets it backwards, inside out, shoes on the wrong feet, shirt not tucked in, zips and buttons not fastened and it takes him ages.
He saw SALT, referred by school, as his speech wasnt very clear. SALT said his speech is normal but is what they would expect to see in such younger child, he also will miss the beginning or end of words (e.g., "boo" instead of book or "bisc" instead of biscuit). He does speech work in school and we model clear speech at home, gently correcting him where needed. We understand around 80% of what he says but at least once a day will be unable to understand what he's saying and we have to ask him.to repeat it/say it another way/show us what he means. He understandably gets frustrated by this. Other people understand around half of what he says and will ask us what he said. He makes up phrases too and we have to try work out what he means. He will ask for black and white sauce (salt and pepper), water shoes (wellies), the hot bag (hot water bottle), his squeeze cloud (shower puff), etc. He seems to think we can read his mind and will suddenly get really upset or angry, when we eventually find out why it will be because he wants a drink or the TV or to be read to or some other need but instead of telling us he presumes we just know without him saying anything then gets cross when we don't so I feel like I have to constantly check whether he needs anything.
He's always jumping, repeating phrases over and over, making repetitive sounds. He does it a lot at home but is worse somewhere like the shops or the playground where its noisy and busy. I have to keep an eye on his noise levels as he'll steadily increase in volume, lord help us if we go somewhere with an echo as he will bellow and make high pitched yipping noises. I have to be on alert to try shoosh him, distract him, tell him it's okay to 'sing'(repeat the same line of a song over and over) but he has to do it quietly, etc.
Ironically he hates noise and wears ear defenders when we're out. He went go in any public toilet with a hand drier, especially those air blade ones, so there are only around two acceptable toilets in the whole of the city centre that he will willingly use. He tells people off for being noisy. Hates sirens. Hates loud engines revving. Tells his siblings to be quiet.
His moods have to be carefully managed and he has to always feel like he's in control. He will deliberately aggravate and torment if he's upset. For example he will stand very, very close to his sister, in her personal space but not touching her. If she moves, he moves too. If she tells him to stop he will say he's not doing anything. He's usually crying and visibly upset while this is happening. Another thing he does when he is in this mood is to hang off me, he will wrap his arms around my leg or my arm and try prevent me from walking or using my arm. If I peel him off he will latch onto the next nearest limb. If he's told to stop it he says he's not doing anything.
I have to monitor him with his siblings. He's got to be the boss, he'll play imagination games but he dictates the terms and woe betide anyone who deviates. He will be very kind and gentle with "his baby" (2yo sibling) then once he's had enough of that he will sit on the 2yo or topple both of them over and wrap his arms and legs around so I have to separate them. He says what goes on TV (Bing and only Bing, sometimes some Ben and Holly) and holds the controller so no one can change it. He has friends at school and says hello if he sees them out of school if he sees them first. If they see him first and say hello he ignores them unless prompted to say hello and even then will only say it grudgingly, he won't play with them if we see them at the playground and when I ask does he not want to see his friends he will say no, they're stupid.
He sleeps reasonably well, 7pm until 6am, but in my bed. He knows he has his own bed, calls it his bed, and I put him to bed in his own bed where he goes to sleep after a story (same book every night) but he wakes up at some point after I go downstairs and every night when I come to bed he is already in there. There is no moving him back to his own bed, he will just come back in over and over, all night long if he has to (we've tried many times). Once he is awake for the day he will wake everyone else up, if he's up we are all up. I get to have a lie in at the weekend and DH sees to him but even then he will walk past DH and come wake me up to ask me if I'll tell Dad he wants cornflakes, tell Dad I want to watch Bing, tell Dad this, tell Dad that.
When he has a bath only I am allowed to bathe him, if I'm not available then he won't get in. He has to wash in a certain order with hair last and the water has to be lukewarm at most. He can't be left alone. I wouldn't leave a 5yo alone for long in the bath anyway but I would expect to be able to pop in and out to get towels, fetch PJs, go for a quick wee, etc. so long as the door was open and I could hear them but I can't with DS as he will tip all of the shampoos/soaps/mouthwash/shaving gel out to make potions, he'll put the cold tap on and freeze himself, he'll attempt to swim complete with diving in off the rim of the bath (he split his head open on the tap last year when he slipped doing exactly that and still tries to do it now!).
Haircuts, nails trimmed, dentist are all non-starters. If its essential (toenails hanging over the ends of his toes) he has to be pinned down, if it's not then it gets left alone (he has hair down to his shoulders), dentist is thankfully understanding and luckily he doesn't eat a lot of sugar so from what she sees of his teeth before he bites her they seem okay.
Writing it all down I think I may have answered my own question but in terms of care needs would this be enough of a start to apply? The money would be useful in paying for some private SALT sessions.