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Is it always better to 'label' Aspergers?

(53 Posts)
NomDePC Thu 29-Sep-11 09:30:43

I have wondered for a long time whether DS1, who's just turned 4, has Aspergers. From the reading I've done online, he displays pretty much all of the main traits (hypersensitivity, social awkwardness/inappropriateness, advanced literacy/numeracy for his age, obsessive behaviour). The main reasons I have held back from investigating are that 1) these traits seem to me to be at the milder end of the scale, and 2) they have generally got significantly better as he's got older. So that now, although he's an unusual little boy, with some problems managing social situations, he generally copes pretty well (going to pre-school at age 3 helped him immeasurably).

Last night, however, I came across an article on the net here (in case you're interested) which frankly could have been written by someone who sat down specifically to describe DS, and I'm now wondering again whether perhaps he is on the spectrum. The other reason I've held off doing anything before is that I was wary of 'labelling' DS when his difficulties are relatively mild. However, this article emphasises how helpful it is to get therapy during the 'crucial' 4-7 years. I'm also thinking ahead to when DS starts school next September; obviously I want to make the transition as easy for him as possible.

So - what I want to know is whether other parents think that an official diagnosis is always helpful? Or can the 'label' be unhelpful in making other children and adults view Aspergers children differently, if they are otherwise coping reasonably well?

I would be very grateful for any advice. Thanks.

Claw3 Thu 29-Sep-11 09:37:41

It wont be the label that will make others view your ds differently, it will be his behaviour (or not as the case maybe)
You also do not have to accept a dx if you do not agree with it. A label is as good as the help that goes with it. Yes ive been told early intervention is the key, i havent seen much 'intervention' with the 'label' ds has, but it has enabled me to fight to get him the appropriate help and for people to take me more seriously. Sorry, about no paragraphs, mn wont let me today for some reason!

AttilaTheMeerkat Thu 29-Sep-11 09:53:01

I would see a label as purely a signpost to getting more help and nothing other than that. Iit can open doors that otherwise remain closed. AS too is lifelong.

He may well be coping now and that is great but that may not always be the case particularly when it comes to school.

As Claw states correctly its the behaviour that will make his peers view him differently. He may have a tough time at school if he is not adequately supported there (and for that I would suggest he has a Statement before he starts reception. His additional support needs then have a greater chance of being properly recognised in a classroom setting).

IndigoBell Thu 29-Sep-11 09:55:08

I think a correct label is always helpful.

It's hard for school to give him the right help with a label.

It's far harder for school to give him the right help without a label.

'Other children and adults' won't even know he has a 'label' if you don't tell them. Why would they know? It will be in his confidential school records.

'Coping reasonably well' isn't the same as 'has no issues'. Whatever issues he has, chances are they're going to be far more noticeable at school than they are at home. (Not always - but normally)

Spiraling Thu 29-Sep-11 10:21:47

Ds has a dx (at 4) and it is helpful to access to help at school and they have been v. good. Made him a transition book, they made a space if he needed it, bit of 1:1 time for social interaction and emotions. His just got onto a OT course the school run for a group for help with co-ordination. His on school action plus which he was automatically put onto due to his dx. Otherwise only a few people knows, but as he gets older (nearly 6) it increasing apparent. He was mild (good flexibility and no real tantrums, good eating if not seemingly lazy), but with school and increasing learning his finding it harder to cope, but he is really is trying and I'm sure it's because we have been working on intervention since he was 3.

As someone wrote if he does not need support the label will just slip away.
As an adult with undx asperger, for me I wished i'd known as it would have been useful for me to know as it could have saved a lot of pain. Now i'm just deciding whether to get myself offically dxed, but helping my son is helping my issues.

I always say ds is asperger/HFA (high functioning autism) he does not have asperger, as it is part of him, a life long condition, not something that disappears but strategies can be put in place.

jandymaccomesback Thu 29-Sep-11 11:15:50

DS is 16, diagnosed at 12. The "label" was really helpful (once he got it). Now he is at College he is able to choose for himself who he reveals it to. The "label" also means there is help available if he wants to use it, but he can decide for himself. Without the label the help wouldn't even be on offer.

Dawndonna Thu 29-Sep-11 11:24:09

I'm with everyone else. Ds1 diagnosed at seven, now sixteen, meant that lots could be put into place at school. School has been extremely successful for him. Dds 1 and 2. Again, early dx. Enabled us to put lots of coping strategies into place and again, school to be on the ball.
Luckily, we have a damn fine school, it helps, but the pastoral care at ours has, more than once, been above and beyond the call of duty.

Miggsie Thu 29-Sep-11 11:30:59

A correct diagnosis is good because then you can think about, and access the special types of assistance he will need (such as social skills training).

What is bad, is if, like someone I know, says their boy can't do something "because he has Aspergers" which then disadvantages the child all their life as they don't get a chance to integrate socially and will end up dependent on their parent when they could have become independent.

Aspergers people can hold down a job and be independent (there are at least 2 in my company) but they need much more help than a NT child would with friendships and social behaviour.

eaglewings Thu 29-Sep-11 11:42:48

My DS was seen at GOSH aged 10 after years of uncertainty. It has opened so many doors to us, a great statement at school which means he had a brilliant transition between primary and secondary school.

It's the little things that add up. Having his own space in the changing room for PE, being able to use a lap top in lessons, having somewhere 'safe' to go at break times.

Then there are the big things, him understanding himself better, knowing famous people with ASD, having 1 to 1 teaching when necessary, being taught social stories to help him interact with his peers, getting a place in the best school even though it's not the closest.

He is on the edge of the spectrum in many ways, but when he is stressed is when it really matters.

One of his best friends is on the spectrum but does not have a dx. He misses out and struggles at school where he need not

jandymaccomesback Thu 29-Sep-11 11:44:34

What is bad, is if, like someone I know, says their boy can't do something "because he has Aspergers" which then disadvantages the child all their life as they don't get a chance to integrate socially and will end up dependent on their parent when they could have become independent.

miggsie just shows how important parental attitude is.

alison222 Thu 29-Sep-11 12:11:03

I agree with others here too. The label has helped me to fight for the appropriate help as now I have an understanding of what that is.

The school will know about this. You can then choose who else if anyone to tell. That bit is up to you.

Finally I have just got the LEA to agree to a statement - although I don't have the draft - which will hopefully mean a much better transition to high school next year.
I also agree that I would hate to see the label used as an excuse. It is an understanding that some things are more difficult and that my DS will have to work harder at those things and may need additional help. It is not an excuse to opt out of the things he does find hard or does not like to do. IMO this is because he has to learn to cope in the world as it is. Unfortuately for him the world won't change to deal with him so we have to make the best of things.

squidworth Thu 29-Sep-11 12:17:17

I would be interested to see the answers for this in a forum for people with aspergers. I never informed other parents my son has HFA but to be honest he was school gate dx anyway, his dx gave me the back up to get what he needs, he needed it at primary but he would rather not have a dx. But knowing what I know now and the resources in schools being drained I would not hesitate to have him dx.

Miggsie Thu 29-Sep-11 12:22:03

Parental attitude is important as I also know someone with a DX who ignores it and seems to think "it will go away" so their child struggles socially but they don't get him any extra help. I think he will end up so lonely, and it does not need to be that way!

bochead Thu 29-Sep-11 12:41:19

My lil lad was the "star" they wheeled out at nursery for ofstead and training observations. A bit quirky, but in a VERY endearing way (used to get extra fruit to pop in my bag when shopping at the market etc he was so cute).

Fast forward to year 2
2 schools and one behavioral unit later.
3rd very reluctant to take him, only do so under duress from lea as an alternative to the private parental 1st choice.
Parents "labelled" awful and investigated by social services
6 year old self harming as he hated himself that much
Victim of mental and physical abuse by 2nd schools staff.
My career is wrecked and I can't work.

STILL doesn't have a "label" worth the paper it's written on, but don't YOU think one might have helped?

He's been to hell and back BECAUSE noone understood him, and at least with a label school staff would have known where to start. In the meantime I've certainly been labelled as the Mum from hell in certain quarters simply for trying to protect my child.

My son's 20 year old friend now ONLY uses his label (carries an autism awareness card) to show the police. They HELP him, nothing is too much trouble if he gets lost etc. Before that as a mixed race lad of 6 foot 7 he was constantly being stopped & searched and spent a few nights in cells for being "rude". Now they do all they can to ensure he is safe, well and happy. Your lad is a long way off being 20 but do be aware our boys are SO vulnerable to the feral bullies that plague our country even when they hit 6 foot 7 lol!

Penneyann Thu 29-Sep-11 14:01:25

DX definitely will help your ds greatly as he gets older. AS becomes far more apparent as child gets older.Our ds was only dx 7 months ago age 10-we never realised ,just thought him bit quirky. Problems were arising at school,socially etc.and school wanted him assessed. He is now getting good support at school but finds it hard to accept dx himself. Would have been much better if we could have known from a younger age. I would say definitely have him assessed. We have only told people/family strictly on a need to know basis.

HarrietJones Thu 29-Sep-11 14:11:14

Interesting discussion as I'm wavering over trying for a dx for dd2. She's doing v well at school though which makes it more difficult.

IndigoBell Thu 29-Sep-11 14:15:23

She's doing v well at school though which makes it more difficult. - you mean more difficult to get a label? Or a more difficult decision to make?

If she has no problems at school, then it is difficult to get a label.

But doing well at school shouldn't make it a more difficult decision to make.

HarrietJones Thu 29-Sep-11 14:45:18

To get the label. We wouldn't get an ed psych assessment as school pays as it's not needed by them IYSWIM. Dh has suggested going private but we don't know where to start. We know a lot of people ( both work(ed) in SN/SS) but to actually get a formal assessment isn't easy, especially now due to no budgets!

justaboutstillhere Thu 29-Sep-11 14:53:07

Message withdrawn at poster's request.

Claw3 Thu 29-Sep-11 14:57:52

I have to say i was convinced my ds would get a dx of Aspergers, ds scored highly in IQ assessments and highly in most other assessments, until the ASD team started to assess him, i didnt realise he had half the difficulties he has. So on the surface, he appeared to be managing, until he had to transfer this knowledge to real life situations, he simply could not.

I sat and observed a session (through a 2 way mirror) of ds with experienced ASD specialist SALT who obviously knew the correct questions to ask and how to interact with ds. I was shocked at just how much ds struggled with the questions and interaction and i thought i had a very good understanding of ds.

IndigoBell Thu 29-Sep-11 15:31:08

Harriet - go to your GP, and ask for a referral to a child development paed.

EPs don't dx ASD.

oodlesofdoodles Thu 29-Sep-11 21:32:17

I'm very interested in this discussion. We have decided not to accept our DS's dx. Partly because we don't think it's accurate. Partly because educational help seems to be based on need rather than labels. Partly because we want professionals and friends and relatives to see the boy as he is and not to make assumptions about him. I'm guessing we can get him 'labelled' at some point in the future if it seems helpful.

NomDePC Thu 29-Sep-11 23:01:42

Thank you all so much for your responses. It's very interesting that the overwhelming consensus is that a diagnosis is helpful, though there are a couple of dissenting voices. I would be very interested to know what kind of 'help' is actually available for children with Aspergers, particularly outside the school context (DS won't go to school until next September), and particularly in terms of help in forming friendships and overcoming social awkwardness (I think this is the main area in which DS might need support)?

oodlesfordoodles I'm interested in your differing opinion. If you don't mind me asking, how old is your DS? And did you seek an assessment and then decide that you were unhappy with the process or the diagnosis, or was it that you didn't want an assessment at all? (Please feel free to tell me to butt out, but I'm interested because this whole process is so totally unknown to me.)

Thanks again so much for taking the time to reply - it's a massive help.

IndigoBell Fri 30-Sep-11 07:32:31

You can join a local NAS group, who might run all sorts of things. My local one runs sat morn play groups.

You can also go on a NAS early bird course.

Also school can help him with social skills and with forming friendships.

justaboutstillhere Fri 30-Sep-11 07:56:35

Message withdrawn at poster's request.

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