Got diagnosis of for my son today

Hi, did they tell you that you were going to get a diagnosis on a certain day? I never got that, I thought I was just going in for feed back after an interview with speech therapist so I hadnt prepared for what they told me. I have calmed down now and realise that nothing has changed, he is still my little monster (as I call him) with his funny ways but now he will get more support and understanding.  Your little one is very young so hopefully she will get all the help and support from day one at nursery/ school etc. From what CAHMS and school have told me, we as parents will get extra help and support too. I dont know if you feel the same but half of me wanted a diagnosis and the other half didnt, so very mixed and confusing feelings. Good luck and let me know how you get on xx

Hiya, I am awaiting diagnosis (this week) for my 3 year old daughter. I am the same, when the doctor said yes, she is not as she should be, she has problems it broke my heart (even though I knew deep down).

I cried for two days solid, it broke my heart. And now back to square one, the scary diagnosis is looming. I need to kick myself up the bottom and listen to my head when it says its a good thing its been picked up so young. 

I hope you start to feel better soon :) x

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 :)

Thank you so much for your reply. I'm afraid it did start the tears rolling again.. but in a good way! Hearing from someone with similar experiences definitley helped. Yes I had almost convinced myself that nothing would come of it, half of me thought they would eventually tell me either they didn't know what it was or that he was just a little sod and would grow out of it. School have been great and have already applied for a statement, they have been treating him as if he already had a diagnosis and all the strategies that they have put in place have really helped... if he's happier at school he's happier at home and visa versa. May I ask how old our ds is? I havent told my ds who is 9 about his dx, he has never asked why he was going to all the appointments at CAHMS I think he assumed it was about his ears as he is also under ENT after having grommets. I didnt want to tell him that he "might" have autism incase it turned out that he didn't. So that is next on the agenda. he already knows that he doesn't always fit in and that he looses his temper and cant control it but Im not sure how he will cope with or even understand what I have to tell him. Any advice would be greatly apprieciated and thanks again.

Hi Dawnyp,

I had a similar reaction to both my son's Aspergers diagnosis a few years ago and my own last year. I believe it's very common to feel like this. The fact that you weren't expecting it at todays appointment has no doubt contributed to your sense of shock - I had a similar experience as I was told by a SENCO when I went to pick my son up from school one day - I knew they were having a multidisciplinary meeting at the school - but had no idea that a diagnosis would come out of it there and then. Like you, we'd also been involved in the assessment process for quite a long time (although not as long as you have!), and I think by the time we received the dx, I had almost convinced myself that nothing would ever come of it! I don't know if you'd started to feel the same way.

On reflection, I think that for me, the reason I was so upset, even though I already knew that my son was on the spectrum deep down, was that it felt so permanent. Although I now know that an aspergers dx is not a life sentence, at the time, it felt like my son had been given one. I was focussing too much on the negatives and the obstacles faced by people on the spectrum and I think convinced myself that his dx meant that that my son's life chances were virtually reduced to zilch! But like I say, I've only realised that this was what was going on in my head with hindsight - and it was mostly subconscious I think.

Since then, for all of the blips and trip-ups we go through, I've learned to realise that this is not the case anyway. Once my son got his dx, he obtained a statement from the LEA and his teachers (most of them..there'll always be a few arses!) made the effort to learn how to work with him. As a result he's much better at coping in the school environment and a happier kid all round! I think he feels better too, just knowing that there's a reason why he sometimes feels different from his peers - and why he has problems with misunderstanding people and being misunderstood. So in general, I think diagnosis can only be a good thing in the long run - but that still doesn't stop it coming as a shock does it.

I'm sure you'll start to feel better soon. I know there's a kind of stereotyped notion that all parents breathe a huge sigh of relief when our kids get their dx, but it is just a stereotype and we all react differently. Please don't feel bad about that!