label or not?

[star]

Our son is starting speech therapy and I know there are concerns regards ASD also. If he is doing well at preschool and improving and is on the mild end of the spectrum would I be wrong not to push for a full diagnosis. Would I not be doing the best for him by adopting this approach?

 

My thinking is that if he is on the mild side and is improving with age and coping well currently - then the diagnosis may not add much - just something for him to feel labelled with if you see what I mean??

 

Thanks for any thoughts.

[bid]

Hi Star,

 

That's a tough decision to make <'>

 

My personal opinion is that while it's really wonderful that your son is making such great progress, unfortunately there may come some times in the future when he finds things getting very difficult for him (adolescence can be extremely hard for our children, for example).

 

Without a dx, you might find it even harder to get him the support and help he might need, especially educationally.

 

These are only my personal thoughts, and I do hope I haven't upset you in any way ...I don't want to sound too negative when it's absolutely brilliant that your son is doing so well.

 

Good luck <'>

 

Bid <'>

[oracle]

In my opinion there is no mild end of the spectrum, however that is my opinion. Again in my opinion there are no straight lines with autism but there are peaks and troughs. By this I mean that some children with ASD will progress well for many months and then appear to regress. A regression usually happens at a time when the child is under stress or there have been changes that they can not cope with. We live in an ever changing world so this happens a great deal of the time.

 

Going for a dx is a matter of choice. You could wait to see if it is necessary, because while I agree that it is probably a good idea for you to adopt his approach, there is no guarantee that school will. Many parents opt for the dx because without it they have no hope of getting the support for our children that is needed.

 

My youngest son sailed through Nursery and Reception only to crash out in Year One and is now home educated. My eldest had no academic problems or behavioural problems all of the way through Primary School bust crashed out of Secondary School after a total breakdown, which was followed by his dx of AS which is also considered by some to be mild autism. Many of our children cope with their ASD for many years before they crack. Would it make any difference if the support was there before is was actually too late? I think it would. But I think that we are a very long way from that happening.

 

Oracle

[jb1964]

Hi Star,

 

This is so hard to call. I'm assuming by pre-school you mean that he's only very young.

 

On the one other hand my daughter was only diagnosed at 13 - and I really wish we'd known earlier - as school has been a complete nightmare for her - but I will never know for sure that things could have been any different especially with school etc (although we would have done things differently as a family).

 

Although you say there are concerns regarding ASD - assessments may not reach a diagnosis of ASD anyway - they may just say that he has certain autistic traits (which we all have) but not enough to be 'labelled' as you say.

 

Take care,

Jb

Edited July 25, 2006 by jb1964

[Suze]

hi I,m with Carole , my son has breezed along this past few months, this week however has been dreadful, you never know where their ASC will take them ,or how it will affect them, my son has hit a real low and been depressed of late, I don,t think anyone could have predicted this , so I,d go for a dx , best of luck Suzex.

[justamom]

Personal opinion - but i would go for a dx myself because i think that with a dx you might be entitled to more services other than what you would receive without a dx IUKWIM!!!

[LizC]

Hi Aspergers is not a label, it is what they are!! I went to a conference recently and the speaker said that it is wrong not to get a diagnosis and he said it is actually discriminative to that person not to get the diagnosis, diagnosis means help/support. it is far easier to say autism that have that child been labeled 100 times over by other people (naughty being one of them!) he also said that autism is autism, you either aren't or you are and he didn't believe in a mild end! aspergers goes in phases, they can be as 'normal' as any other child one day then the next their aspergers comes out in them and can be the hardest day of you life!) it can also get harder along the way as well as easier lol. do get a diagnosis as not getting one could not be so good for that child, leading to low self esteem.

 

Hi again forgot to say Matthew started his assessment at about 4yrs 10mths (4 1/2 when I took him to the gp for a referrel) and diagnosed at 5. he has had many difficulties at school and without that diagnosis probably would have been called very naughty and most likely on his way to being expelled!

Edited July 26, 2006 by LizC

[Lynden]

I agree with the others in that diagnosis can be very helpful in terms of the access you get to services/help that you might not otherwise get.

 

Lynne x

[LizK]

People talk a lot about labelling but I don't really know what their fears actually are. If a child is autistic they are autistic whether they have the diagnosis or label attached to them or not. Having the diagnosis at least means you can understand them better and use more autistic-specific techniques to help them at home and at school. Sometimes think an undiagnosed child forced to live a NT life much have a miserable time. Early intervention to can make a world of a difference as well

 

If by labelling though you mean possibly misdiagnosing or the medics needing more time to come to a diagnosis then maybe you should wait. Sometimes you do need time in borderline or complex cases. Some children do have seemingly autistic traits as 2 or 3 year olds then mature out of it, have two friends who experienced this but their children were never autistic rather were developmentally immature and just gave the appearance of having some features. The wrong diagnosis for a child is detrimetnal but equally is the right diagnosis 3 years too late

 

We were quite fortunate with our son to have support based upon his needs. OK SALT was minimal but gettinga diagnosis didn't improve that We were already getting weekly visits from a preschool teacher and nursery had got extra funding and put strategie sin place to help him. At that point a diagnosis would have added little and it wasn't clear whether DS was just immature, whether he had a primary language disorder or whether he had ASD. Waiting until the picture became clearer was the right decision. However as he approached school age his autistic features became more apparent and it was evident that getting help based upon his needs wasn't going to work. We got a diagnosis shortly after his 4th birthday which enabled us to go on the NAS Earlybird course and bad the services of the local ASD-specific SALT for 6 mths. it also meant that school could put strategies into place, made the statementing procedure easier and also we now have autistic outreach involved rather than a generic worker from the learning support team. Without a diagnosis we would have had none of this

 

Lx

[aro]

Are you worried that it might not look good on a CV? I can understand that concern as a parent but I would think that any letter of application he writes could make clear the extent AS might/not affect your son at that point.

Dx should open up more areas of support as others have pointed out. It also means that all future teachers are aware that any difficulties arising may be down to ASD.

Anna x

[Tylers-mum]

I can't add anything to what the others above me have said. I agree with everything they have said.

 

I had to fight for 4yrs to get my son dx b/c no one believed my concerns, now we have the dx, he is getting the help he soo deserves for his education to progress.

[smallworld]

Hi.

from getting our youngest son a dx of asd at 4, we realised we had gone through many of the same behaviours/traits with our elder son (then 8 ) but he appeared to be coping well at school though a bit off the wall at home. Our paed warned us that we may face lots of problems as he approached the transition to secondary

he is now 10, we are only now in the process of getting a dx, probably AS.

I wish we had done it sooner, he now has a 'naughty, rude, disruptive,aggressive,passive.......etc.' label instead.

School haven't really helped by refusing to explore the possibility that there is anything going on other than 'bad behaviour' despite us voicing our concerns for the past 3 years.

We decided to go it alone in seeking a dx, and have only now informed school as to his assessment.

Like you, we were hoping that he would manage to avoid being labelled, so I know where you're coming from ( I think as parents we could both be dx with AS)

Now, I really do see that label as more of a help than a hindrance, and can see the benefit.

HTH,

 

wac

[Kathryn]

Hi star,

 

I can understand your worries. My personal view is that an earlier dx is better.

 

My daughter was doing well up to the age of 7, when her difficulties became more obvious. it was another 8 years until she got a diagnosis of AS. I feel sorry that she's missed out on all the years when she could have been getting appropriate help at school. The mid teenage years are not the best time to come to terms with a new diagnosis - there is already so much social and academic pressure to deal with, I feel. My daughter is still struggling with this identity - I feel that if she'd been diagnosed when she was younger she might have accepted it more easily.

 

K x

[Jill]

All I can say is that we are currently "under discussion" with our LEA about a school for The Boy (he's 4). There is no doubt that they would have forced us down the mainstream route if we did not have that official dx & I can tell you that would have been disastrous for The Boy.

 

So, for us, getting the dx means we now have a strong case for special school & it has helped us to "convince" the LEA of the same.

[star]

Thanks for all your replies.

 

I can see the benefits as you mentioned especially for the school system.

 

I suppose I was thinking that if my son is borderline I won't push them on this side of things.. unless I didn't feel he was coping at preschool or school but if he was definately AS or ASD then I would obviously go with the experts.

[Bullet]

If you read my thread on wanting feedback you'll see why I personally wish I had had a diagnosis years ago. In school even the smallest changes could have helped me. Eg I have poor handwriting and a poor grip so being allowed to use a biro rather than a fountain pen would have helped. Setting up and encouraging me to use lunchtime clubs would have helped with breaktimes. Of course, without a label I was just this weird person