Aspergers being mentioned again. Just want to talk.

[LynetteScavo]

After a long meeting with the school today about ds1 (12), Apspergers has yet again been mentioned. School kept asking me if a diagnosis would help DS, and help him understand why he cant make friends/only has one friend. Seems a weird reason for a full blown DX. Surely the school should just realise what type of person he is and deal with it.

He won't be able to walk around adult life wearing a t-shirt with a diagnosis on.

3 ed psych's have ruled Aspergers out (only one actually tested) and I don't think he will ever have a diagnosis, which is fair enough.

On paper he ticks every box for aspergers, but I thought he was coping in every day life. Apparently not at school.

Ds is happy with no friends. Just because he doesn't look happy doesn't mean he isn't.

Does he need friends?

Should I just try and teach him how to make friends, even if he doesn't want any? His social skills are really good now. He says hello and goodbye without being prompted, and nods in all the right places.

Hi Lynette,

"Surely the school should just realise what type of person he is and deal with it".

No, I am sorry to say it does not work like that unfortunately. They will cite lack of resources at you.

A diagnosis can open doors that will otherwise remain closed; also a DX will help your DS understand more and precisely why he is the way he is.

EPs as well CANNOT diagnose AS as its a medical condition; that is for either CAMHS (who can be pretty poor) or a developmental paediatrician.

If the child's additional needs at school (particularly secondary) are not being met it all too easily falls apart with its knock on effect on family life at home.

So should I be looking for a developmental pediatrician?

The school DS attends is a forward thinking state comprehensive. They are very aware of difficulties like Dyslexia and Aspergers, and seem to have a very strong Learning Support department.

The school has been brilliant at not trying to force my square peg boy into a round hole, but obviously things could be smoother.

Would a private diagnosis carry as much weight as one through CAHMS? I don't think DS needs extra funding, just a bit of extra understanding.

Hi Lynette,

Your GP should be able to refer your son to a developmental paed.

Your son may not actually be able to access their Learning Support dept without him being either properly known to them or on their SEN register. It does not sound like he is accessing that place at all currently.

Have you had any dealings with the SENCO at this secondary school to date?. I cannot help but think that you and your DS have been let down this past year and also in the later years of Junior school when his additional support needs became more apparant.

You are his best - and only - advocate here. No-one else is better placed than you to fight his corner for him, this is because no-one else actually will do so.

To be honest, I would consider using IPSEA's website template letter and apply for your son to be statemented given his ongoing social and communication issues (which may well be connected to him being somewhere on the autistic spectrum). You do not need a dx nor school's permission to do this.

He is on school action plus, will this help in him getting statemented?

I wanted certain things put in place when DS started high school, but his junior school told me to keep my mouth shut and my head down (not in so many words!), to give him a fresh start, which I did. I found out last Easter they didn't send on his school file, and I think this was all part of giving him fresh start. It didn't work though. Initially he was so terrified he didn't speak to anyone for the first few weeks, and now he can't last more than half an hour in a lesson without feeling desperate.

Yes because SA plus will have evidence on it. However, he could have gone straight to having a statement without having to be on SA plus first.

His junior school clearly had no idea and failed him abjectly as a result. His secondary school must not be allowed to fail him.

Also the support offered on SA plus is limited in scope and can be too easily curtailed. Your son to my mind needs a statement, no two ways about it.

LynetteScavo - your post of Friday makes ME want to weep in response because I know just where you're at - crying because at last someone understands! I've been there too. The years before a DX or at least some kind of definition are very hard because you have to try all the time to explain your ds to other people and it's very lonely. That's another thing that a DX may give you - access to support groups for yourself. (Though I'm guessing you could go along anyway, you should be getting more info on the local network once you plug into the system.)

My ds is not statemented but he still has access to more resources since the DX, so that is the first critical step, I think. (For example, now he's heading for GCSE years, he is on the list of students who sit exams separately in a quieter, smaller setting.) For DX, we saw a paediatrician via our GP (6 month waiting list for us); they were fabulous and we went through the full set-up of seeing a paediatrician, ed psych, speech therapist etc. Sensory issues are a big factor for him, too.

amberlight - your description is so vivid - thank you. That is precisely my ds's sensation in noisy, crowded situations (school, shopping centres, ice rinks where they insist on blasting out music!) and as you say, the quieter ones try to fit in and mask it until they snap. I grew very tired in y7 of having teachers tell me he seemed fine - implication being that he was turning it on for me, when he got home and spent the evening rocking with sheer stress.

So LynetteScavo - your desire to stop it all, remove the stress and start again is actually a perfectly sensible one. My ds reached a point where he couldn't face school at all and he had to be phased back in gently - starting with the lessons he could manage, short days etc. He didn't do a full timetable for a year or so. He also had a couple of 'safe places' in school that he could go (library/art rooms etc.) and an 'exit card' from lessons - though he didn't use it because he felt it made him too visible and he couldn't always identify the stress till it was too late anyway!

What worked for us was finding one good point of contact within the school who can manage things for you, circulate info to other teachers, work with you on adjusting the timetable etc. That may be the SENCo or another member of the pastoral team.

Most of all, rest assured - there are many of us out here who understand what you (and he) are going through.

WillowInGloves, Thank you so much.

I'm waiting to hear back from CAHMS as to whether he is still under them (will phone again in the morning)- it was actually only just over 2 years since we last saw them for anger management- I have a GP apt for Wed, and DS has a new exit card, which I am strongly encouraging him to use, but as you say, I'm not sure he will be able to identify the stress until too late. I also contacted a private developmental pediatrician, but with her fees at £1,400, the private route is not a possibility.

I did go to a support group once when DS was in Y3 and school refusing, but felt like a fraud, as he didn't actually have a diagnosis.

You said;
"For example, now he's heading for GCSE years, he is on the list of students who sit exams separately in a quieter, smaller setting"

This is what DS will need. His junior school was terrified of him playing up and not sitting his SATs (he's got 5's, and the Head Teachers award for actually sitting them!) so if for no other reason, I need make sure he has a diagnosis to get through his GCSEs

CAMHS saw your son previously for anger management . I would reply that you saw the wrong people at CAMHS. Some CAMHS are far better than others and ASD is patently not their area of expertise. I would seriously look into going down the developmental paed rote via your GP rather than use CAMHS solely.

To both you and WillowinGloves I would try your very hardest to get both of your children statemented particularly as they are now in secondary school where allowances are not always met. WillowinGloves, your post was very poignant and a reminder of how home life is affected primarily because their needs at school are not being met. BTW Willow, has anyone mentioned statementing to you?.

Would suggest too that you post under the Special Needs:children part of this Mumsnet website (there is also a recent thread on there about CAMHS that you may want to read). That particular forum also receives far more daily traffic.

Hi - thanks Attila. :-)
Re statements - my ds wouldn't get one. He comes into that edgy borderline grey area where he just shades into the spectrum sufficiently to have difficulties, but not enough to be statemented - or, to be fair, really to need one. In a way that carries its own difficulties - he doesn't feel he fits the SEN community or the NT one at school! His small selection of friends are among the other quirky, off-beat types. So for us, just having the DX is about the right level - as I say, a bit of paper to metaphorically wave at anyone who needs it and a shorthand phrase to use when needed.

Lynette - 1400 Yes, you need to go via the GP, don't you! Apart from anything else, you could be in this for the long-haul and better to be in the system now. The waiting lists are the problem, I know - when you're desperate to meet his needs quickly.

One of the most useful things said to me by an EP was that it didn't matter about the label (this was early on in about yr4) - just to deal with my ds's needs as though he had AS. She pointed out that it couldn't hurt and could help - and so it was. As soon as I went away and read Tony Attwood, and the school put the ASD strategies into place for him, things improved. So can your ds's school do that while you are on the waiting list?

Check on your school's website too what the SEN policy is. I discovered that my ds should have had a transition plan in place because he was SA+. Hopefully that gives you another set of specifics to plug into. One of the hardest things is simply learning your own way round a secondary school - you don't know what to ask for because you don't yet know what goes on in the day-to-day detail. At home you know what your ds's triggers are and how to manage them and that needs to be transferred to school. Schools love specifics - it's much easier to say, 'he needs the homework written down' [because he can't manage verbal instruction in a crowded environment] than to have endless discussions about why it's not done. An early lunch pass was another key element - got him through the noisy chaos quickly.

It sounds like he's had a very rough start - but he does have time to sort this out. It will get better!

Hi Willow

Why do you think your DS would not receive a statement - is this what you have been told by various professionals over the years?. My son's difficulties are not totally dissimilar to what you describe in your first paragraph and he has a statement (and from a county that IPSEA receives a lot of complaints about). In my son's case the statement has been extremely useful re school because they then know his difficulties and this doc has gone some considerable way to getting his needs met. Its also legally binding so carries with it its own clout (unlike SA or SA plus).

On SA plus here your DS would not have received a transition plan of any sort:(. All of DS's peers on SA plus were and have been left to fend for themselves at secondary with predictable mixed results; they are treated the same as everyone else i.e those without any additional needs.

Attila - yes, that's the feeling. I know someone whose dd had ADHD, AS, and dyslexia and still couldn't get statemented! And what my ds needs can be met within the level of support the school can offer without a statement. It's just the usual keeping on top of it all and regular liaison to make sure they do!

How's it going LynetteScavo?

Lynette, just to say, I'd also go for a diagnosis. DS is 12 & was diagnosed at 7. It has been very helpful for me, because I can explain to people why he is a bit different & give teachers strategies or literature to help them understand him better.
I've spent alot of time with DS teaching him stuff that comes instinctively to the rest of us. It sounds so tedious, when you type it out, but I've taught him opening conversational gambits, taught him how close you stand to people, taught him how to give a compliment, taught him that even if he can't quite look someone in the eye, he must at least look at their face - I could go on & on & on. In the evenings, I dissect social interactions he has had that haven't made sense to him & bless her, DD is always up for a bit of role play - so we do that too.
He has made huge improvements since the diagnosis & since I became aware of what I was dealing with & could really work on him. Poor Boy!!!!
I've had bugger all success getting a statement, because academically DS is not far enough behind even with his dyslexia. Despite a very hard petition & an appeal, I cannot get him one - but I am still glad to have the diagnosis.

Lynette, just wanted to say we have just had DS diagnosed this month (already had Dyspraxia now AS added on) and it has been amazing the extra help & resource his school have been able to bring into play because they have the diagnosis. However, just a word of caution, you need to think about how you explain all this to DS. Our DS (11) was fine with the Dyspraxia as it explained lots of physical problems he'd had for years but being told be had Aspergers sent him into a tail spin. He is now really struggling to cope emotionally, feels depressed and can barely get through a day at school without an out burst or having to go to learning support to calm down. He says he's never going to get better and can't understand why he was made this way. It breaks my heart.

In all the talk with SEN, Dr etc. about the diagnosis I hadn't thought through how he'd feel about knowing. Just assumed as he is so bright that he'd understand when it was explained. I'm not saying your DS would be like this but sometimes in all the talk about getting a label etc you can't know how they will feel about it.

Thank you.

Saw a very lovely GP today who has referred to CAHMS. I feel so relieved, as I didn't think I would be believed.

I am thinking maybe DS has sensory processing problems, very poor social/emotional skills and happens to be bright, rather than Aspergers. His co-ordination is fine, and he has been known to lie.

At the end of the day though, he needs some sort of help. The GP did say if CAHMS can't help he would then referrer DS to a developmental peadiatricain.

Willow - you are describing my DS2 exactly. How I watch him go through those school gates every morning, I don't know - much less how he does it.

LynetteScavo - I'm so glad you've got your referral. My DS was dx by a paediatric psychiatrist as having severe Asperger's. I still had to fight for his statement, even with this dx and armed with the fact that the school were ready to permanently exclude him! He eventually got a low incidence statement (eg: not many children in the county like him) which in my county meant that it came with money - he's fully funded 25 hours a week. Since then, he has alot of support and he's managed to stay in mainstream secondary school. He's now in Year 10 and is doing the most complete timetable since he was in Year 7. It's not perfect and I think it's going to have to be tweaked pretty soon, but the situation isn't nearly as critical as it was even last year - and that's because of the dx which led to the statement which led to the support. This year is the first year he hasn't been excluded from school and this is the first term I haven't had a daily phone call because of an incident.

When we went for a dx it was with the long term picture in mind. I don't know if he will ever be completely independent - it will definately take longer than his brother. Now he has a dx, he'll be able to have help from charities like The Autistic Society, Mind, Mencap etc if he needs it. He'll have extra time/support in exams etc. It will affect his whole life and having the dx means he knows why he's like he is - and other people will know too. Some people said that it's a label and it's wrong - my answer has always been that if it was something physical - cerebral palsy, MS, MD, cancer etc then nobody would question asking for a dx - what's so different about AS?

Good luck - it's the beginning of a long road, but it only gets better - with a few bumps along the way! :)

Girltalk just wanted to add that my ds 11 was dx last february with AS and has symptoms of Dyspraxia also (although not dx on this).Came as complete shock to us but the biggest problem we had initially ,apart from coming to terms with it ourselves, was ds's reaction to the dx. He took it really badly,became very depressed and withdrawn 'why am I different etc'-we were very concerned for a while. We just left things lie for a while, never really discussed the dx for a while with him and left it go at his own pace. He did come out of it after about 5 weeks I'd say. He is ok now-he is still a little sensitive about the mention of AS but I do try and drop the word into conversation occasionally. He knows he has it obviously and has extra resource help at school etc but just doesn't really want to discuss it. I suppose what I am saying is that I am glad we have got the dx now as opposed to in a few years time. The earlier the better definitely!

Lynette I would shop around for a private dx. Ours cost approx £400 and was excellent-couldn't fault it. Full 3 hour private session with us and ds- no stone left unturned,very detailed. Got an appointment within 3 weeks. But we did have quotes for around the £800 mark also. We got the Ed.Psych.who did the school assessment on ds to recommend some child psych.names to us and then she referred us to the one we decided to go with. Good luck.

ChristmasEvie, could you message me the person you used? It would be worth us travelling for.

I now have a date to see someone (at CAHMs?) to see if they can help us "bring change within our family" and maybe go on the waiting list for CAHMS in January.

DS has had a really good week at school. Last week he politely refused to go into lessons, and preferred to spend his day in the corridor. This week he has participated in role play. .

Any advice on what to ask for at this CAHMs interview warmly welcomed.

The last time we had an initial interview DS was school refusing, had been excluded from school for the rest of the term and I was saying I would home educate if necessary(cue raised eye brows). They asked us what help we wanted. We had no idea. They offered us anger management.

Really don't know what to expect/insist on when we meet in January. His sensory processing issues are the main problem.

Do I just come out and say we want DS tested for Aspergers? He already feels different. I don't think a label will make any difference to him.

I now have a date to see someone (at CAHMs?) to see if they can help us "bring change within our family" and maybe go on the waiting list for CAHMS in January.

I do not like the sound of this at all; the "bring change within the family" smacks of if in doubt blame the parents!. I would find out exactly who you are seeing because seeing the wrong people at CAMHS can make things far, far worse for you all. I'd be telling CAMHS as well that you want DS assessed for AS and ask them as well who and how they assess such a group of people.
Also I recall that CAMHS offered you all anger management last time!. Fools.

Can GP not refer you to a developmental paediatrician now?. Some CAMHS are good but many people's experiences with them has been VERY mixed (see Special Needs: Childrens board of this website and post there too as that board receives far more daily traffic) and ASD is not always their specialty. Another way forward here is to go private.

A label should be used by you and he as a signpost to getting him more help.

As for someone suggesting anger management to you - that person clearly have no idea at all. He needs help with his anxiety which is likely stemming from being somewhere on the autistic spectrum of which AS is a part. And a statement of special needs. SA plus is not enough to help him at school, particularly in a secondary school.

Believe me, all that is necessary otherwise this will keep on happening for the rest of his school days to the overall detriment of his life at school as well as the associated knock on effect on your family life at home.

You are his best - and only advocate here; no-one else is better placed than you to fight his corner for him and actually no-one else will.

Thank you, AttilaTheMeerkat that has focused me.

I didn't like the "change within your family" bit. We mostly cope very well at home, it's school and people who don't know/understand DS which is the problem.

OK, in the week before Christmas, and today, we took DS1 to the shops. We don't normally do the shops, but he has been perfectly happy in town/Ikea before now. Today we did HMV, then a gadget shop, where he looked totally ill and stood by the door not moving ,then on to Ikea for one picture frame (we had parked there) and then the park. By the time the other 2 DC were happily eating ice creams in IKEA DS1 was silently crying. He refused any food or drink. By the time he had been in the park for 20 mins he was a different child.

It breaks my heart.

I don't think he has Aspergers. I think he is just very sensory sensitive.

Any advice welcome.

Bumping for the evening.

Has anyone had their child dx for sensory processing disorder?

Bumping for the evening.

Has anyone had their child dx for sensory processing disorder?

Have just read some of the posts on your thread lynette Have you considered posting your last question on the special needs children board.

It gets alot more traffic than this one, although it has been quite quiet over the hols.

BTW, I have a Dd who is 9 and has recently been Dx'ed by CAMHS with ASD. She struggles really badly with crowded shops and general anxiety.

She often finds school difficult but is now getting some support.