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PostPosted: Mon Dec 03, 2012 12:44 pm 
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Location: Birmingham
I am not quite sure how to put this as this is the first time I have openly said to anyone (even if it is anonymously) that my son has 'Aspergers'. DS's teachers suggested we might want to have him assessed for it last year (year 1) and we declined as we felt that apart from some hiccups he was doing ok at school and we made teachers aware of potential areas of difficulty. His year 2 teacher has not mentioned anything yet but I have seen the look as I try to explain some of DS's idiosyncrasies. Overall, they have been great with him, they have an IEP in place and with or without the diagnosis he is generally coping and the teacher's give him some leaway when occasionally he is not willing to co-operate - which is becoming less common. We have not had it formally diagnosed but DH is a psychiatrist and has worked with Aspergers and autistic spectrum even though that his not his main sub-speciality. We know enough to know that his behaviour fits the category as 'high functioning' (although I find that a rather awkward term) Aspergers.

What I am really trying to ask is : what is the point in getting it diagnosed? It isn't really something that needs a 'cure' as much as it needs coping mechanisms - even if there was a cure I am not sure if I would want it - he has his quirks and he is all the more lovely for them. I know it might help the school get additional funding to support him but
I can't help but think even if he gets extra support at school over the next few years, in the end it will become a self-limiting label for both school and life. We know what his weaknesses are, so why shouldn't we just continue to support him as he is? We understand his behaviour and adjust our parenting / support according to his understanding of events but are we robbing him of support that we ourselves cannot provide?

I would be grateful for any thoughts, especially from people who have any experience. Does anyone feel that getting it diagnosed was a hindrance in the long-term or was it a positive thing and how?



I wrote 'aspergers' in quote marks as I was about to write the post when I saw something in The Guardian saying that the new DSM manual has dropped it as a separate diagnosis and it will become part of the autistic spectrum of disorders. Not sure what ICD will do but DH tells me there has been disagreement over whether it needed to be classified separately or was part of a spectrum of autism or indeed one end of a general human behaviour.

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PostPosted: Mon Dec 03, 2012 1:37 pm 
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Location: caversham
DS2 was a nightmare toddler, eventually got a diagnosis at age about four of autistic spectrum disorder but very able. This did unlock some extra help, a place at a nursery with extra speech and language support and a few extra hours when he went mainstream.

By the end of reception IEPs were quietly forgotten. :D Since then his quirkiness has been dealt with informally. He did get a couple of extra supported visits as part of secondary transfer but now in year 8 he just blends in, as much as a loud mouthed ginger nut can. :lol:

The benefits were early on, I also went on a couple of training courses that helped. Now the only benefit I can see is that if his behavior were to change we could hope to get support faster?

Primary school teachers described him as aspergers type, which suited them as it categorized his needs, although I did ask one teacher to remove that phrase from his end of term report as I wanted to show him the report. :roll:

In your case as everything is ok and you have the skills to cope the benefit of a diagnosis isn't so obvious other than it might help if you hit some problems and wanted extra help asap.

So I'd be inclined to let sleeping dogs lie, just monitor the situation.

Like your point about not wanting a cure for just having a different quirky personality. :D

Oh and it took me about four years to say autistic without getting a lump in my throat. :?


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PostPosted: Mon Dec 03, 2012 4:18 pm 
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Here is the number one benefit to diagnosis:
At some point, your child may realize he is not like the others. He may find it more difficult to make friends, and it may bother him. This was the point my daughter was at when we received the diagnosis at the age of 7. The diagnosis really helped her. It was also the beginning of her to learn to be able to understand how she is different and for her to form approaches that worked specifically for her (as all children with ASD are different).

The ASD label never got her extra funding at school, although it initially got her on School Action (which was later removed due to her not having educational difficulties). The ASD label has never stopped her from being able to do anything; however, it has explained her quirkiness.

And now she is in secondary, the ASD label has gained her entry to a social group, which has been very helpful to her.

The ASD gives you legal protection for your child. Now you don't ever have to let anyone know about the ASD label, but it is there if you need it.

Now, here is the bad side:
There are possibly going to be parents who do not understand the label, and will think less of your child for having it. It could make some ignorant people warn their children away from yours. This being said, you don't want those kind of adults being around your child anyway, so you are better off. And people will pick up that your child is "different" with or without the label. As your child gets older, children can be a bit cruel about those who are different. The ASD label may help protect against that a bit as some other children may become protective of him because he is "different".

The ASD will not stop your child from going to a grammar school, it will not prevent your child from being taught to their educational ability. And the ASD label will also not make school deal with your child appropriately. Some schools will be great, some won't. Even in a good school, some teachers are better than others.

The label is not a cure all in any way. But the label can give a high-functioning child the ability to understand their differences and NOT feel bad about them. Without the label they may feel bad about these same differences.


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PostPosted: Mon Dec 03, 2012 9:46 pm 
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DS struggled throughout primary, but didn't have a diagnosis. Year 8 was tricky and the school suggested Aspergers. He had some counselling and we all called it 'social difficulties'. This made him feel better. He's now 16 and finds school easier than before.

The SENCO said that half the school was probably on the spectrum! Lots of very bright boys cooped up together.


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PostPosted: Mon Dec 03, 2012 10:53 pm 
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Location: Birmingham
Thankyou all for sharing your experiences :D .

Yes, the social aspect is definitely the most difficult. We are going to have to mull it over. I still feel inclined to leave things for now as I am not sure what it would add but it seems I might need to reserve judgement about what might be best in the future.

UmSusu

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PostPosted: Mon Dec 03, 2012 10:59 pm 
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I suspect a child in your family might be just on the end of the spectrum so I sometimes wonder the same thing as you - but you have more "certainty" with the expert in the family. For me, the biggest advantage would be as parents we would then tackle things jointly in the right way ... but you don't need this.

Yes school might provide some different help in "making friends" if there was a diagnosis. But it might not work, and what about other children who don't make friends easily but wouldn't get an ASD dx. It seems a bit unfair that you get help like this with a dx, but don't if not.

What does your DH think about it all from a scientific point of view? Does quirkiness have to have a diagnosis? And is it really a diagnosis?


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PostPosted: Tue Dec 04, 2012 12:06 am 
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Location: berkshire
I can only speak from my own experienec........As my son (formally diagnosed with high functioning Aspergers at 7) went through the school system there were some benefits to having the diagnosis. At each school he has been on the SEN register and therefore been able to access support should he need it. This has always been done on his terms.
He struggled socially and was able to ask for advice from the SEN department and so felt more in charge. As a child who couldnot understand facial characteristics such as happy, sad or angry he had a problem in the playground environment. A specialist told us that the 12-16 age was the hardest for a child with Aspergers.
He was assessed in year 10 and found that he also had a comprehension speed problem- it takes him an inordinate amount of time to read a question and work out what it is asking him to do, he was allowed a small amount of extra time to compensate for this.
He is now applying to university and having the formal diagnosis will help him access support while away from home, again on his own terms.
He understands he has quirks and decides whether or not to tell others depending on the situation.
So from my experience a formal diagnosis was helpful but was never seen as an excuse for him to 'duck out' or for lapses in behaviour. It was never forced on him but it helped him understand his own difficulties.


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PostPosted: Tue Dec 04, 2012 1:41 pm 
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Location: Bucks
I think you have to decided what you think is best for your child at this time in his life. As he gets older you may change your mind and you may feel a diagnosis is more appropriate.

My DS was alway different but it was only in Year 4 that he really had some major social problems and he wanted to know why he was different. He had a Speech & Language assessment and saw a play therapist for a year but I didn't really know what was different about him either so we didn't do anymore about it. During Year 5 DS continued to ask why he was different and was adamant he wanted to know why. The only thing I could think of was to speak to an Educational Psychologist which I did and he was the first person to say he thought my DS had Aspergers.

I took him to the GP and he very quickly was referred to a Consultant and diagnosed. We then took him to the Educational Psychologist which was the best thing we ever did because although he was doing well at school (average) the report showed that he was underachieving. At the time we were also going through the 11+ which my son missed by miles (long story) - we did appeal and fought to get him into the GS he is currently thriving in.

After the appeal I decided that I would try and get him statemented (which numerous people had said I would never be able to). He went to his GS without a statement but he was on SA+ and they were brilliant with their support. It took a year for me to get him statemented and he now gets 20 hours support a week (there is an LSA in all his academic classes who is there if he needs them but he is now pretty self sufficient), automatically gets extra time in exam & assessments, social skills classes, once a term one to one's with an ASD specialist teacher (the later two he would not get without a diagnosis or a statement).

DS has great self esteem, is happy and doing well at his GS, for us a diagnosis and statement was the right path.

Good luck with whatever you decide.


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PostPosted: Wed Jan 16, 2013 9:12 pm 
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I concur wholeheartedly with Atila. My daughter is now 10 and was diagnosed just over 18 months ago.
Although her diagnosis was a little hard to deal with at first, it has helped her self esteem no end because the feelings of inadequacy, being different and 'weird' compared to her friends now have an explanation. It has also helped educationally because certain techniques can be used in the classroom which help her learn and there is great understanding among the staff about her social difficulties.

Dealing with issues experienced by an AS child would be done in a very different way should adults (and peers) be unaware of what having AS can be like.

You are fortunate your son's school is on the case and aware of the syndrome. Sadly this was not the case with my daughter and I do believe that she would have been diagnosed sooner had her school been aware.


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PostPosted: Mon Feb 25, 2013 8:19 pm 
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I have told very few people that dc was diagnosed with AS.....I too find it very hard to talk about because I was dreading that dc would be treated differently. Although happy enough in primary dc was always 'quirky' in nature but had close bonds with friends that he still loves to see. However we got to year 5 and it was a complete disaster due to his class teacher-simple as that. Ds became incredibly anxious,upset and withdrawn and to cut a long story short we needed to find out how to best help him. Up until that point we had managed ,encouraged and helped pretty effectively but we got to a point that year that we were seriously worried.

Ds doesn't as yet know that he has been diagnosed with AS and although the primary did very little to help his next school were aware of the diagnosis from the outset and the difference that they have made to his life is amazing.


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