autistic spectrum disorder high functioning

[JazzyJ]

Hello every one, I was over in behaviour/development but followed a suggestion to come over here instead.
My 4yr old ds has just been diagnosed with ASD high functioning. I think is just about sinking in now. I've begun tentatively telling people about it, although I am very concerned that several people just wont 'get it', and I don't know enough yet to educate them so any suggestions will be welcome.
Bloody terrified about the filling in of the DLA form, just reading the pamphlet the doc gave me made me feel a fraud, we could be so much worse off. and after having read through other threads about it I'm not looking forward to analysing our situation in that much detail. It has been hard but you just get on with it don't you.
There have always been behaviour issues with ds and there have been massive struggles with learning stratergies to get round difficult situations, I thought every one was going through the same stuff to begin with but it has become clear over time that we are working just that little bit harder to get through the day. I just got people asking me how I coped and nursery teachers suggesting I get referals to various specialists, mainly for his hearing. One healthvisitor even suggested at one point that he 'may have a touch of autism' which frankly made me gag.
I guess that is one of the real positives of the diagnosis it gives us a definate, and so hopefully this is the end of opinionated play ground diagnosis, which have ranged from 'he just a boy' to milk allergies to ADHD. All of which are justified to some extent but get wearing after a while. I think if one more person mentions the word homeopathy I will go into spasm.
He runs up and down the house humming and making explosion noises when he is not engaged in any other activity, something that has always had the alarm bells quietly jingling in the background. He has always been agressive towards people , me in particular, but also extremely loving and affectionate, spontaniously flinging himself at just about everyone. He definately responds well to visual timetables, and even just forwarning of whats going to be happening next. His language has come on leaps and bounds in the past 9 months, before that he was considered about 12 months behind his peers, but that could so easily be to do with Glue ear, he's having gromits in June. He is very bookish and will sit reading for hours. He loves to draw and will spontaniously reach for his sketch book to record something he has seen. His languge is up to speed now but he still speaks in his own 'special' language at times, and will quite shamelessly make up a word for something he doesn't know rather than ask. He has never really gone through that Why? Why? Why? stage that a lot of my friends kids have been through, not that I have ever really compared him, just assumed he had a very strong personality. He seems like a real showman but when put on the spot can become very self aware and shy. He loves watching films over and over again and will recreate the odd times he has been to the theatre months after the event in quite astonishing detail. He makes up his own words to songs, my favorite being 'incy wincy sausage climbing on the plate'
I used to dread leaving the house because he would just run away, we used reins but he would just throw himself on the floor and go purple with rage. He has never been clingy by any means, wandering off for miles without bothering to look back and check where his base is. I could go on but am getting tired of thinking so I'll just post this and see what happens, thanks for reading.
J

Jazzyj - You could have been writing about my ds1. The only real difference is that ds1 has never suffered from glue ear. Ds1 has little feeling in his body so he tends to throw himself down on to hard surfaces just so that he can feel something. We're just getting to the made-up songs stage. Ds1's favourite is "Postman Pat, Postman Pat, /postman Pat nicked his cat."

Ds2 is climbing on my knee so I'll come back later.

Back again! Yes, the DLA form is an absolute b*gger to fill in. I posted mine a couple of weeks ago and we're now just waiting for a decision. MrsForgetful posted a site somewhere which gives you a guide on how to fill things in and what to add. It can really help to write down what happens on a really bad day and send that with the form too. It's also a good idea to photocopy everything. It can also help to write down each routine and ritual your ds has to go through. It was only when we did this for ds1 that we realised it actually takes 1.5hrs to get ds1 bathed, dried and dressed. If (like us) you have no other children to compare too it's hard to know what non-autistic children do. You just tend to take it for granted that every household does things the way that you have to.

Unfortunately there will always be people who just don't 'get it'. In our case it's my family who just don't/won't understand that we can't treat ds1 in the same way as we'd perhaps treat a non-autistic child of the same age. I'm always being asked why ds1 is till in nappies all day or why I don't take him out more. Other people will really surprise you with just how understanding they can be. These are the people who can help you make it through the bad days. That's why I find Mumsnet so helpful.

Has anyone given you a list of useful books/materials to look at to help you?

A lot of what you've described sounds like my ds too. He's 5.5 and not being diagnosed, but I suspect aspergers. It's tough, we have good days and bad days, but I'm finding that I'm quite depressed about his behaviour, among other things. I can't help 'grieving' for the 'normal' child that I feel I've lost. His 'differences' have only been apparent recently. He's my first, and as Coppertop says, it's difficult to know what's normal when you've got nothing to compare to. I also find it hard that dd (3) who adores her brother, is copying a lot of the behaviour.

I'm not sure what of use I have to add. I just wanted to let you know you're not alone.

Thanks for your support,
No no one has given us a reading list yet, if you know of any good starting points that would be great.
I empathize so completely Stupid girl, I said at one of his assesments 'you just want your baby to be perfect don't you', and the speech therapist said that he is perfect he just has to learn how to use the system from a slightly different angle than other people.
My husband reckons there is a conspirasy to pigeon hole creative people by giving them disorders, when actually they just have personalities that don't fit in to mainstream. And I know that fitting into the mainstream is what we all want for our little guys because there seems to be a sense of failure attached to not fitting in, But what ds has which his 'normal' friends may not, are very definate ideas about what he likes and what interests him which is great because it gives him focus, and being on the higher functioning end of the spectrum does mean that he can 'learn' how to do mainstream, hopefully. And if he can't then he's not a failure he's an artist or a musician or an accountant.
I hope I'm not being naieve.
I guess the really positive thing about getting the diagnosis is that you have a title to give to people that has a meaning that they have to take seriously.
I must say over the weekend I still found it really hard to accept. Ds's behaviour was appauling on Sunday, He was constantly winding up his lil sis (19 months) and even pushed her down the stairs. She just won't leave his side, unless he's plugged into the electronic baby sitter. She makes efforts to copy his running up and down but her heart just isn't really in it and she loses interest pretty quick, but she can administer a decent left hook when required.
I think I've gone off at a tangent. Oh well I guess that is fine here. You are so right COPPERTOP, this site is helping so much in so many ways. thanks.
MARYZ, What are eye Q tablets?
I'm using a viual timetable and social stories, but any other hot tips would be greatly appreciated.
Please tell me if I'm being inappropriate I don't really know the rules yet, are there rules?
Thanks J

Whoops ... I mean Visual timetables. And please pardon any other spelling mishaps, I'm an artist I can't help it

That sounds just like my ds1 and his little brother (14mths). Just lately I've had to keep ds1 from attacking him. It's usually when ds2 invades his space or plays with a toy in the 'wrong' way. I was on the receiving end of the kicks today and have a nice purple bruise on my leg.

Ask away if there's anything you need help with. A good jargon-free book to read is "Freaks, Geeks & Asperger's Syndrome" by Luke Jackson. He wrote it when he was about 13 or 14 and it's a good explanation of why children with AS/HFA do the things they do. It was like reading about ds1 in 10 years time.

We're hopefully going to start using visual timetables soon, and ds1's first Social Story is being put together at the moment.

The visual timetable does seem to help a lot, when we remember to use it. Ds has one at nursery too which they now use for the whole class. The social stories have been usful aswell, but I think I made a mistake in using ds and his mate as the main characters in the first one because it is difficult to apply it in different situations. I also got ds to do the illustrations which has proved great in terms of him recognising emotions etc but he managed to get an unofficial monster into one of the pictures which has proven to be a bit of a distraction.J

jazzy- i will post properly tomorrow- i will give you the DLA site coppertop mentioned- it REALLY helps you see just what you have to do that is different to another mum with a 'typicaly developing/NT' child of the same age.
It's too easy when you care for the child to not notice just how much t=you do- you realise at the end of the day what you have done because of how tired you are- but during the day you just do it all without thinking.

Part 1 of the DLA form is fairly simple- so I advise you get that done as soon as possible and return it- it maximaises the ammount of 'back pay' they send you if they agree an award...they say return the forms within 6 weeks- but in my own case due to my own problems i took almost 3 months to get the help i needed to fill in the forms...the DLA office rang me 3 times- and it was the same lady each time- she was pleasant and didn't pressure me- but i know others on here have had terrible ignorant people dealing with their case.

The website i'm on about makes you see the big difference from saying :

YES my child can walk up and down stairs

to

Yes my child can walk up and down the stairs- but before he can he has to switch the light on and off 6 times and count the stairs - and then he will have to do the same to come down the stairs.

(i have made this up- but from reading posts on MN i have read things like this before)

My point is LOOK at your day and imagine what would happen 'if......?'

P.S JAZZY.....this is a short post from me!!!!!!! More to followXXXXX

That DLA site was an absolute lifesaver for me. They ought to give us money just for getting through the bl**dy form!

Ds1 is going through a monsters stage. The little terror has even named one after ME! Do you think he's perhaps trying to tell me something?

Jazzy- here is that site i mentioned....

www.bhas.org.uk/

chat later!

Thankyou so much, The form has arrived and I shall begin, my stomach is doing dredging feelings.
Told my parents at the weekend, My Pa just don't get it, totally impervious to being educated. He dismissed it as 'well all our lot are unsociable, he's alright, he's clever, he'll be fine'. I tried to give him stuff to read and it was untouched by the time we left. Mum was slightly less dismissive, but still kept saying things like 'look there he's using his imagination', but I think with her it was shock so she can be forgiven until we all know a lot more about what Ds needs.
Went to a conference today on SEN, by a local organization called Parent Partnership which was really usful in terms of finding out what we are up against when Ds goes into reception in September. With or without a statement, it seems like pot luck as to whether you actually get the support your child needs. I think we are lucky to live at our end of our street because most kids on our street go to the same school which has a good SEN record but it is massively over subscribed. There is another about the same distance away which we kept being told is better equipt for ASD but even with the diagnosis it is unlikely that we will get in because of their catchment and over subscription. One of the parent partner people said interestingly, that everyone with statements will be going for the latter school so maybe ds will be better off at the more local anyhow. What a bloody mine field, time will tell I think the acceptance of applications ends at the end of this week, so i'm high tailing it up to those schools tomorrow to hand in the diagnosis, in the hope that it bumps ds up the list a bit. but from what people have said to me only a statement will do , and ds will be very lucky if he recieves one because of his high functioning.
Is this how it's gonna be, just waiting and hoping all the time that it's all just going to happen like the bit of paper or the polititian has said it will, but the reality is that we should expect the worst?