Got diagnosis of for my son today

Hi Dawnyp –

It sounds like your son has a place in a great school – they should be adopting tailored strategies for our kids regardless of diagnosis, but I think all too often, many teachers refuse to make any accommodations at all without a dx. From some of the stories I’ve read it sounds like our kids are the lucky ones in that respect,  and I agree - it makes such a difference to their whole lives!

I really wouldn’t like to offer advice on what to tell kids about their diagnosis as it’s such a personal thing – but I can recount our story in case it helps – our situation was quite different from yours though: Our son was nearly 5 when first referred by his school. We already had an idea that he may have ADHD or some form of autism, but like your son, his presentation  was complex  and didn’t quite seem to fit the bill for anything. Having said that, it only took them about 18 months to come up with a dx of “HFA, possibly Asperger's” (yes that’s actually what the report said!), which I believe is fairly quick judging by other people’s experiences....but it seemed to drag  on forever at the time, with endless different professionals calling us in to their clinics or coming into school to observe him.

As well as being younger than your son when he was diagnosed (he was 6 – is now 9), ours knew all the way through that they were assessing him to try and understand his unusual behaviours and difficulties with staying calm, concentrating etc. I’m not sure whether this was a good thing or not, but to be honest it didn’t occur to me to try and hide it at the time. Having said that I guess it meant we weren’t in a position where we had to ‘break the news’ later, which I suppose made things a bit easier. To be honest, I imagined that he’d want to know everything about his autism once he was diagnosed and bought lots of explanatory books etc...but he really wasn’t that interested. He was just like, ‘...yeah ok, cool...’ and that was it. He occasionally tries to wriggle out of trouble by blaming his autism for misbehaviour (which is sometimes valid, sometimes not!) and he does *** his ears up if there are autistic kids on TV or something, but other than that it doesn’t seem to hold much relevance for him.

Perhaps because your son is unaware of the diagnostic process he’s been through it might be an idea to break it to him by degrees. As you say that he’s already aware that he’s a bit different from his peers and he gets into trouble at school etc, being given an explanation might be a real relief for him if he’s able to understand it. I guess it’s a good idea for him to already have positive ideas of what autism/Asperger's is, as if he’s only heard people being rude about it, or if he sees it as some kind of ‘disease’ then discovering he has it could turn out to be less helpful! I think we ‘bigged up’ all sorts of neurological differences as our son was going through the assessment process – talking in front of him about the achievements of this person with Asperger's, or that person with ADHD and how people like Einstein were probably on the spectrum etc. Everyone has different ways of doing things though – I’m sure he’ll be fine whenever/however  you decide to tell him, because he has a mother that obviously has his best interests at heart.

Anyway, I’m getting a bit rabbity here so is probably time I went away. I’m very new here myself and still haven’t got around to doing the ‘hello’ thing yet – just dived in at the deep end gob first as always!

Oh yeah – there’s a book called The Blue Bottle Mystery: An Asperger's adventure which my son enjoyed reading. It’s a fairly short mystery story in which the main character, a boy of about 9, who has problems with school and social situations etc, gets a diagnosis part-way through the book. If your lad has difficulties with reading, the book’s  short enough to read to him over 4 or 5 evenings at bedtime. I got ours second hand on Amazon, but the NAS might sell it. I also bought a couple of other books after our son’s dx – one by Tony Atwood which helped us as parents – “A Complete Guide to Asperger's Syndrome” I think it was called, and a nice picture book (your son may be too old for this now) called, “I am Utterly Unique”, as well as Gunnilla Gerland’s “Finding out about Asperger's syndrome, HFA and PDD”. To be honest I’m not sure that these last two made much impact on our son, but the Gunilla Gerland one offered some explanations for certain things that he was able to identify with, and the picture book is just quite nice!

Rabbiting again......

Best of luck with everything anyway. It’s all still new and just sinking in at the moment – there’s no rush to make any decisions right away. Take care :)

Hi Dawnyp –

It sounds like your son has a place in a great school – they should be adopting tailored strategies for our kids regardless of diagnosis, but I think all too often, many teachers refuse to make any accommodations at all without a dx. From some of the stories I’ve read it sounds like our kids are the lucky ones in that respect,  and I agree - it makes such a difference to their whole lives!

I really wouldn’t like to offer advice on what to tell kids about their diagnosis as it’s such a personal thing – but I can recount our story in case it helps – our situation was quite different from yours though: Our son was nearly 5 when first referred by his school. We already had an idea that he may have ADHD or some form of autism, but like your son, his presentation  was complex  and didn’t quite seem to fit the bill for anything. Having said that, it only took them about 18 months to come up with a dx of “HFA, possibly Asperger's” (yes that’s actually what the report said!), which I believe is fairly quick judging by other people’s experiences....but it seemed to drag  on forever at the time, with endless different professionals calling us in to their clinics or coming into school to observe him.

As well as being younger than your son when he was diagnosed (he was 6 – is now 9), ours knew all the way through that they were assessing him to try and understand his unusual behaviours and difficulties with staying calm, concentrating etc. I’m not sure whether this was a good thing or not, but to be honest it didn’t occur to me to try and hide it at the time. Having said that I guess it meant we weren’t in a position where we had to ‘break the news’ later, which I suppose made things a bit easier. To be honest, I imagined that he’d want to know everything about his autism once he was diagnosed and bought lots of explanatory books etc...but he really wasn’t that interested. He was just like, ‘...yeah ok, cool...’ and that was it. He occasionally tries to wriggle out of trouble by blaming his autism for misbehaviour (which is sometimes valid, sometimes not!) and he does *** his ears up if there are autistic kids on TV or something, but other than that it doesn’t seem to hold much relevance for him.

Perhaps because your son is unaware of the diagnostic process he’s been through it might be an idea to break it to him by degrees. As you say that he’s already aware that he’s a bit different from his peers and he gets into trouble at school etc, being given an explanation might be a real relief for him if he’s able to understand it. I guess it’s a good idea for him to already have positive ideas of what autism/Asperger's is, as if he’s only heard people being rude about it, or if he sees it as some kind of ‘disease’ then discovering he has it could turn out to be less helpful! I think we ‘bigged up’ all sorts of neurological differences as our son was going through the assessment process – talking in front of him about the achievements of this person with Asperger's, or that person with ADHD and how people like Einstein were probably on the spectrum etc. Everyone has different ways of doing things though – I’m sure he’ll be fine whenever/however  you decide to tell him, because he has a mother that obviously has his best interests at heart.

Anyway, I’m getting a bit rabbity here so is probably time I went away. I’m very new here myself and still haven’t got around to doing the ‘hello’ thing yet – just dived in at the deep end gob first as always!

Oh yeah – there’s a book called The Blue Bottle Mystery: An Asperger's adventure which my son enjoyed reading. It’s a fairly short mystery story in which the main character, a boy of about 9, who has problems with school and social situations etc, gets a diagnosis part-way through the book. If your lad has difficulties with reading, the book’s  short enough to read to him over 4 or 5 evenings at bedtime. I got ours second hand on Amazon, but the NAS might sell it. I also bought a couple of other books after our son’s dx – one by Tony Atwood which helped us as parents – “A Complete Guide to Asperger's Syndrome” I think it was called, and a nice picture book (your son may be too old for this now) called, “I am Utterly Unique”, as well as Gunnilla Gerland’s “Finding out about Asperger's syndrome, HFA and PDD”. To be honest I’m not sure that these last two made much impact on our son, but the Gunilla Gerland one offered some explanations for certain things that he was able to identify with, and the picture book is just quite nice!

Rabbiting again......

Best of luck with everything anyway. It’s all still new and just sinking in at the moment – there’s no rush to make any decisions right away. Take care :)