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DS(5) flagged by school as possibly having aspergers

(17 Posts)
RokerFace Mon 08-Oct-12 11:58:34

DS is now in Y1 - when he was in Reception, during parent's evening, his teacher said she noticed some things in his behaviour which she wanted to talk to us about.

She talked about his fixation with buses (and to a lesser extent trains and cars), almost photographic memory, extremely good behaviour, large vocabularly, his meltdowns (he used to sit under a table when upset and cry but seems to be growing out of this), distressed by loud noises and dislike of any change to his routine. She felt he could be somewhere on the Autisic Spectrum but didn't feel there was enough to refer to the school's SENCO (quote: "I can't refer him because he likes buses"). She suggested we go to our GP.

Our GP has known DS since he was born. She was surprised the school didn't refer him themselves but agreed to refer him to a specialised consultant pediatrician - she did say that DS may tick some boxes for aspergers but was by no means a textbook case.

We had an appointment with the pediatrician a few months ago. After speaking to us and DS, she said DS could well be at the end of the spectrum where having a diagnosis could be deterimental to him and she could like to hear more about the schools concerns. School have only just sent a referral to SALT so we are waiting for an appointment.

The thing is, I feel that eveything positive they have highlighted i.e. his good behaviour, large vocabularly, intelligence is being atributed to the possible aspergers. He is such a lovely boy, kind, polite, thoughtful and we've always tried to instill manners, reinforce positive behaviour, we've always used the correct terms for things and explained them (note: his vocabularly). He has a couple of close friends at achool and a couple outside of school and I've been told by the TAs in reception that he is really popular generally (kids fight to sit next to him etc.).

Obviously, if it's highlighted that he needs support, then we want him to get it - DS having aspergers doesn't affect how we feel about him in the slightest. I think I feel a lot of guilt about DS being premature and poorly when born (not due to anything I did or didn't do, just felt that I and my body had failed him) and now I'm feeling that this is all down to me and all the parenting I have done hasn't been good enough. I love my litle boy so much and I feel like I've let him down somehow sad

I feel a bit lost in this process and no-one seems to have any concrete concerns. His Y1 teacher feels DS has settled really well and the meltdowns have been few and far between so that's a positive.

I just don't know...

moosemama Mon 08-Oct-12 12:21:03

I'm not sure I'd agree with the idea of a diagnosis being detrimental, regardless of where someone is on the spectrum, but I would say that, whether or not he does have Asperger's, you don't need to do anything unless you want to and feel he needs support.

My ds1 (aged 10) has Asperger's and wasn't diagnosed until he was 8 years old, but he did struggle through infants in lots of ways. Ds2 (aged 8) has, I believe, some ASD traits, but is well liked by his peers, is a comfortable middle grade student and is happy at school. In fact we are usually told at parent's evening that the teacher wishes all the boys were more like him. grin He doesn't need any additional support, is achieving well according to his abilities, is well liked and has friends, so I don't feel the need to pursue a diagnosis in his case.

Please don't feel bad. You sound like a brilliant mum and your ds sounds delightful.

RokerFace Mon 08-Oct-12 12:36:04

Thank you moosemama for sharing your story and for your very kind words. It sounds like you've managed to help your boys find their way and they sound lovely!

I feel like his personality is being overlooked and everything being pinned on this possible diagnosis. My good friend (whose son is my DS's best friend) has been really supportive so at least I don't have the worry of people suddenly "looking" at him differently which I was worried about when it was first discussed.

troutpout Mon 08-Oct-12 12:40:37

Your boy sounds

RokerFace Mon 08-Oct-12 12:45:26

Thank you troutpout smile

fedupwithmorningbattles Mon 08-Oct-12 14:37:50

The teachers first port of call should of been the SENCO if there was all the above happening lets face it there was more cause for concern that the fact Ds liked buses confused.

Maybe the fact that the class he is in at the moment is more structured than the reception class therefore he knows what will happen most of the time and the outbursts are when things are unexpectedly changed (?).

Usually they would test Dc hearing/eyesight and then call in S&L therapist IME. As far as I am aware the school(UK) can refer Dc to many professionals but some will cost them i.e have to use their funds. Which some would rather not after all the funds for SEN is in a pot and it is up to the school to decide were to spend it. So if there was a choice of a new TA for a class of 30 or an Educational psychologist to observe your Ds..think we know which one would be chosen.

So they have passed all responsibilty to you instead! They opened a can of worms, stepped back, while you yourself handle everything (including your own mixed up feelings <<hugs>> ) and then shrug their shoulders as if they don't see anything is amiss.....if I had a £1 for everytime I have seen this written I would be VEEERRRRYYY rich.

As you are going down this route (which we already are smile ), rest assured that in the future you can have your Ds re-assessed and have the Dx removed (although not many people do). We were told the same i.e that a Dx will open doors. But we also keep in our minds that we can reverse our actions if we don't see how it helps.

Ineedalife Mon 08-Oct-12 14:48:32

My Dd3 got her diagnosis of ASD/Aspergers when she was 9, it has benefitted her hugely at school as she does stand out as being different now. At 5 she was quirky and slightly odd but the other children didnt really notice.

If you persue this and your Ds does get a diagnosis you dont actually have to tell anyone unless you want to.

Dd3's school know about her issues because they affect her at school but I choose who else we tell and now that she knows about her diagnosis we listen to her opinion on the subject too.

When I first came on here I was in a similar place to you and someone said to me, Try to see a diagnosis as a signpost which points people in the right direction to help your child.

I really liked that and it helped me to understand the need for a diagnosis.

Good luck whatever you decide to do, your Ds sounds fab by the waysmile

AttilaTheMeerkat Mon 08-Oct-12 15:16:54

"After speaking to us and DS, she said DS could well be at the end of the spectrum where having a diagnosis could be deterimental to him"

Never heard of any dx being detrimental; wonder why she said that in the first place?. Did she expand on this?. Me being cynical thinks that she may well have said that to put you off applying to the LEA for a statement which would help him in school.

I would pursue a diagnosis because as he goes up further through the school system, it could well become a lot harder for him if his additional needs at school are not met. Junior school for instance can be really hard for those who struggle with the unwritten social codes that lie within them. All that will also impact on you as a family if his needs there are not met. Also you should see a label purely as a signpost to getting more help; some doors remain closed to you without a diagnosis.

You have NOT repeat NOT let your child down!!. AS has nothing to do with parenting issues.

You need to become his advocate. You're doing a fine job already of being his mother so you can easily be his best advocate as well. In you he has a voice; without you he has no voice. You as his mother are truly best placed to fight his corner for him, this is also because no-one else will.

RokerFace Mon 08-Oct-12 20:10:33

Atilla She said it could be deterimental in the sense that if he is coping and there are no immediate worries then "bogging him down" with a diagnosis and causing him to stand out could make the situation worse. Seemed strange to me but she always said that if we decided not to go ahead with diganosis they would be happy to leave the door open or see him very occasionally (?)

Ineedalife (tell me about it! wink) - that's exactly how I would describe DS! He is quirky and very endearing with it but I do worry he would come across as odd and as he gets older it would be more obvious. Good point too about your DD being aware of her diagnosis as I suspect it opens the lines of communication and she feels more in control as she understands why she behaves differently from the "norm" sometimes?

fedup DS wears glasses and is under the community and hospital eye clinics as he has a slight squint as well as being long-sighted but no-one has mentioned his hearing. I know school are holding hearing tests in a couple of weeks but from my point of view, I think his hearing is just selective (!) so no concerns at our end on that score.

Thank you, you've all given me lots of food for thought and reassurance - it is so much appreciated! Like fedup said, they've thrown this at me and let me get on with it! Thank you everyone for taking the time to reply and for your kind words thanks

Niceweather Tue 09-Oct-12 06:33:15

A very similar thing happened to us and after a private assessment, we found out that DS was very bright and had dyslexia. Several teachers and the school Ed Psycho thought he had Aspergers but they were wrong. He is quite eccentric, very quirky and I think he has a few autistic traits but not enough to reach a level for a diagnosis. The Clinical Psychologist who assessed him was pretty nonplussed that so many people thought he had Aspergers and was adamant that he did not. Try this book, you may find it very interesting. It was recommended to me by the NAGC.

Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, Ocd, Asperger's, Depression, and Other Disorders by James T Webb.

suburbandream Tue 09-Oct-12 13:19:31

My DS2 was first assessed at age 5, and finally re-assessed at 7 and diagnosed with Aspergers. When I first raised concerns his school said that they wouldn't refer before age 7, so I ended up going to the GP. Maybe it's school policy not to refer too early? Lots of early problems with socialising etc "sort themselves out" I suppose

From my point of view, having a diagnosis prevents DS2 being labelled as something other than autistic, eg: naughty, quirky, awkward etc. The thing with autism is that it is such a wide spectrum that even if your son has Aspergers, he might not show all the traits that other Aspergers kids do - I'm not sure that there is such a thing as a textbook case!

Personally speaking, I can't see any detriment in having a diagnosis. it's not the same as having a statement and doesn't automatically mean you'll get loads of help, but it might be useful later on if your DS does need help. DS2 knows about his diagnosis, and so does his older brother. It helps them both understand his need for routines, his anxieties etc. We tell friends on a "need to know" basis and as far as I'm aware none of school mates know about it, or if they do it is certainly never brought up so it doesn't bother them. One book I really like is this. Really simple, small book and easy to understand. NAS have some good leaflets too and many of them are free.

Please don't be too hard on yourself, you are clearly a caring parent who has done absolutely everything your DS needs, and of course you haven't let him down smile

MsNg Tue 09-Oct-12 15:01:38

DS's paed explained that there would be a long wait for a diagnostic assessment for possible ASD and then added "but it's not as if a diagnosis would make any difference anyway" this is despite my DS having some very substantial problems. I explained that I am trying to get a place for him at a special school that only takes diagnosed children and on that basis she agreed to hurry it up. Last time I had the same discussion with her I said that having a diagnosis would help to stop people thinking that I'm a bad parent and she scoffed that that idea, there are also things like access to groups, resources and support services in this area that a diagnosis would unlock.

I don't think it would necessarily be something you would want to pursue for your DS but I do think that there are some paeds out there who don't really understand what the real life implications of not diagnosing might be and I think you should seek a diagnosis if you think there would be some benefit to your DS in having one. It's not as if you or he need ever reveal it to anyone unless it would be useful in that case to do so.

Agree about the Misdiagnosis and dual diagnosis book, I've found it really useful.

madwomanintheattic Tue 09-Oct-12 15:52:36

It's interesting, but it won't help you work out which camp he falls into. it's not a diagnostic tool. grin

RokerFace Tue 09-Oct-12 17:05:54

Wow, thank you for all your replies!

Both books look really interesting, hopefully they might help me with questions to ask (myself and the professionals!) - thank you for the recommendations.

Niceweather Can I ask how you went about a private assessment?

Thanks again for all your support and for all your nice comments about me not being too hard on myself (I've resigned myself to suffering maternal guilt until DS is 65!).

Sorry I have to dash - got to get tea on!

moosemama Tue 09-Oct-12 17:34:29

Ds1 has the book that surburbandream recommended and has found it really useful. We also have this one which we are reading together.

We tell people about his diagnosis on a need to know basis as well. He has chosen to tell his best friend, but hasn't shared the information with anyone else at school. There are three other parents at school who know as well, one is his best friend's Mum, one is a close friend of mine who has concerns about one of her own children possibly having AS and the other has an older child with AS. As I see it, there's absolutely no reason for anyone else to be told.

Getting a diagnosis was a relief both for him and us. He now understands why he finds some things harder and thinks/feels differently to his peers. Whereas he was reaching an age where the other children were noticing he was different and he was becoming more and more aware of it himself.

As others have said, it also means he isn't just labelled as naughty or rude (eg when he misreads social situations).

We have put a positive spin on it for him as well though and he is proud that, for him, having AS means that he is good at maths, science and logical thinking. He is also convinced that having AS makes him a master computer games player! grin

He understands that everyone is different and has different strengths and weaknesses and that his AS is at the root of many of his own strengths and weaknesses.

Niceweather Tue 09-Oct-12 18:17:46

We went to see the Head of Child Clinical Psychology at local big city hospital. He had been recommended to us and is an expert in Autism. I think there are different routes to go down though. He didn't do much more than an IQ test but I guess the interactions during that were enough for him to tell.

Sarraburd Tue 09-Oct-12 21:57:45

Our DS (3.5) got diagnosed ASD in June. Initially I was really upset - id thought his behavioral problems were due to various operations/trauma in hospital; I was expecting them to say he needed to see a psychologist or that he was too young to be diagnosed, and instead given strategies to help. It was really hard and I'm still processing it.

But actually I think now that it's much better to have the diagnosis. At least now we know (sort of) what we're dealing with and can begin to help him. And with a diagnosis he is entitled to help. (frankly, given how they have tried to backtrack on what he might be entitled to, I am very glad he is entitled to it rather than us just hoping for it. Funding politics are shit).

I don't really see how/think it could be worse/not help not having one than having one.

Good luck, it's tough out there.

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