Aspergers/ASD support thread

wornoutmumoftwo

My son was assessed as being on the autistic spectrum 2 years ago, I spent most of the time since in complete denial but can now see for myself (long story).

Basically I would now like to get my son diagnosed as I would like to know "where" he might be on it.

He gets a lot of support and will not lose/gain in this area by a diagnosis, I think I just need to know for sure and was looking for advice/reassurance that this is a wise move.

He is coming up 7, attends a special communication school four afternoons a week and gets support at his mainstream school.

Thank you

Nicki

wornoutmumoftwo wrote: »

I don't know if I am in the right thread or not, basically, my son was assessed as being on the autistic spectrum 2 years ago, I spent most of the time since in complete denial but can now see for myself (long story).

Basically I would now like to get my son diagnosed as I would like to know "where" he might be on it.

He gets a lot of support and will not lose/gain in this area by a diagnosis, I think I just need to know for sure and was looking for advice/reassurance that this is a wise move.

He is coming up 7, attends a special communication school four afternoons a week and gets support at his mainstream school.

Thank you

What's the difference between being "assessed" and being "diagnosed"? Where I live if you are told your child is ASD that is a diagnosis. If they don't want to give a committed diagnosis, you are tod they have autistic features/tendencies, and this may or may not lead on to a formal diagnosis.

Also in my area and I suspect nationwide, you aren't told where on the spectrum your child is. You would be told if your child was aspergers or classically autistic, but there is a wide range of abilities with these two diagnoses. You can probably assess for yourself whether your child is high or low functioning at the moment, but autistic children are like any other children in that their abilities and characteristics change over time. A child who might present as low functioning at age 3, could be reasonably high functioning at an older child (think Donna Williams or Temple Grandin, two very highly achieving articulate adults who were very low functioning as children) and a child who is meeting the majority of milestones at age 3 with some mild communication issues, can regress, or never achieve further progress so go from high to low functioning.

If your child already gets the support he needs, I wonder why you feel the need to have him benchmarked? That's not meant to be a criticism, but speaking as the parent of a child on the spectrum, I am just struggling to think of any ways in which that could be of benefit to you or to your child?

Savvy_Sue

wornoutmumoftwo wrote: »

He is coming up 7, attends a special communication school four afternoons a week and gets support at his mainstream school.

Whatever you want to know, I would start with the special school, unless you feel you have poor communication with them, in which case start with the SENCo at his mainstream school.

I don't think any of us can say for sure whether a formal diagnosis is a good or a bad idea, especially at that age. The main thing is that he's getting the support he needs, and it sounds as if he is. Some people are against it, others just need to know how bad it really is.

it may be that it would be worth working towards more formal diagnosis in time for the next review of his Statement. It certainly won't be something which happens instantly, I'm afraid, and you may find some resistance from the professionals, because if he's already getting the help he needs why does he need further assessment?

In that case you could ask your GP if he can make a referral.

That's all a bit on the vague side, I realise ...

wornoutmumoftwo

Thank you,

The assessment was done by the educational psychologis when he was 4 and I was offered a diagnosis but refused, I personally think he is Aspergers by what I've read.

Talking to other parents who go to the special Communication centre they have all had there children "diagnosed", and although I know he's on the spectrum and can see for myself that he is.

Things have happened with him lately that have upset me, his behaviour at home is becoming more challenging, he was breaking his heart the other day because he didn't get a sticker at dancing and try as I might I couldn't get him to understand and that in turn upset me.

It just got me thinking that maybe a diagnosis would be more beneficial in the long run, that I would have a better idea of where he is. I think he's aspergers but then sometimes he's incredibly hyper, he has low attention span, poor listening skills and social skills and very obsessive about things but was reading and writing at 3/4.

Maybe I'm just having a bad couple of weeks as I've always said I'd never go for the full diagnosis.

Thanks so much for your advice, sometimes it's just nice to know you're not on your on and your words do make sense.

Nicki

Definitely not on your own!

Have you looked into the Earlybird or Earlybird+ programmes run by the NAS (I think he's on the cusp age-ways so not sure which programme you'd be better off with). They are great for helping parents learn why kids on the spectrum behave in certain ways, and strategies to help them. There's always a reason for it, but it can be tricky to work out what that reason is!

Otherwise, have you come across this forum yet? http://www.asd-forum.org.uk You might find some answers and support there.

FWIW - though its a personal decision, I might be inclined to stick with your first instinct not to get a formal diagnosis just yet if all the help is already in place. However prepared you are for it, it still comes as a hammer blow to most parents, so if there is nothing extra to be gained for you or the child, why not postpone/avoid that!

jog

In our area, it tends to be the Community Paeds who 'diagnose' ASD / AS, however this is often in conjunction with assessments from other professionals such the Educational Psych and specialist Speech and Language Therapists.
If you haven't already seen all these people then it might be worth talking to your G.P. or School Nurse and ask for a refferal to the Community Paeds.

Have you heard of the Early Bird Plus courses? They were devised by the National Autistic Society (NAS) and are run over several weeks, I found it really useful for giving me practical help and advice in understanding my son's ASD.

The NAS also run lots of different workshops for parents on lot's of subjects to do with ASD, if you look on the NAS web site you can look up courses in your area. They are free to parents and can give you lots of useful advice on understanding and dealing with your son's behaviour.

As has already been said I don't think you'll get a diagnosis that tells you exactly where they are on the spectrim, it's more about identifying that they are on the spectrim and understanding your individual child's traits, as they can vary greatly from child to child.

Good Luck

jog

seven-day-weekend

Well.

Our son and his girlfriend have been staying with us for a week, they went back yesterday. They both have AS.

It was lovely to see them and I'm so glad that he has got a girlfriend who cares for him and shares his interests. No parent can ask for more than that.

But they have worn me out!

I have had to watch undiluted dvds of superheroes, werewolves, zombies, and then discuss them at great length; he wouldn't meet my friend and I have had to make excuses; his girlfriend talks in monologues as she can't relate anything without going into minute details; they took over my internet connection....the list is endless!

I haven't even got dressed today I have been so tired.

Still nice to see tham though and there were good times too!

His girlfriend is applying for DLA, she hass a Disabilities Advisor to help her, so I hope she gets it.

blue_monkey_2

Worn,

Although your son is getting the help now, having the diagnosis will help him for the future, especially as we have no choice over where our kids go to school these days. if the support is wirthdrawn at a later date you'll have that 'piece of paper' to give you the help. The education that your son is getting now sounds great but you really never know what is around the corner. We had to move for example and have a nightmare getting a new paediatrician, I really do not even think I'd get the help if I did not have the piece of paper with his conditions on it.

I would speak to the doctor and cope every single report and piece of paper you have, they have to refer you and with the paperwork on file it willmake it easier for the future. You'll also need copies for the paediatrician - the more you can give them to go on the better. Good luck. x

wornoutmumoftwo

Thank you, I am fortunate to live in Scotland (he was deferred from school a year so he's only P1 at the moment) and an area that is very good on helping children, they are talking about getting him into full time mainstream next school year but it will be a gradual transition.

The school doctor is actually on the team that does the diagnosis so I might talk with her first.

annie2005

wornoutmumoftwo wrote: »

Basically I would now like to get my son diagnosed as I would like to know "where" he might be on it.

He gets a lot of support and will not lose/gain in this area by a diagnosis, I think I just need to know for sure and was looking for advice/reassurance that this is a wise move.

In the long run it is always better to have a diagnosis than not. At the moment it might not matter but in the future when dealing with other bodies outside the education system it will be helpful. A formal medical diagnosis holds more weight at that point than anything else.