Aspergers - referal to paediatrician

[peppajay]

My son will be 5 in June and I have always known he is very slightly different to other children, his pre school always hinted he was 'unique' and other people see how his behaviour is different to that of his peers. He is a stickler for routine and everyrhing has to be just so. He doesnt cope very well if he is looked after by anyone but me which results in both his grandparents and his dad not being able to cope with him, with me he is fine still has strange behaviour quirks but not to the extent that he is with other people.

Anyway we had parents eve last night and the teacher said exactly the same as me that he is a total stickler for routine and that if anything changes he can't cope and gets very upset. She can cope with him in class and finds him no problem in the classroom he is keen to learn and she says he has the most fantastic memory she has ever seen in a 4 yr old. However if she is away and he has a different teacher he is a complete and total nightmare and when his teacher isnt with the class on her planning aft and he has 2 different teachers for an hour each they find him really difficult. His teacher is lovely and says my son is a real joy and they have a fantastic relationship and she re assures these teachers that he isnt really this little boy they see he is a loving fantastic boy but he likes what he likes!!!

There were behaviours when he was younger that made me think aspergers and again at pre school but they were very non commital and said 'maybe' but he is very young so take the wait and see approach.

Socially he copes but is also very happy playing alone and has only ever been invited to one birthday party in his class when I know there have been several. It doesnt worry him at all and his teacher says he has friends and he plays with other children but equally he enjoys his own company and he hasnt formed any strong friendships.

He is the most well behaved and compliant child at home he does exactly as he is told and never complains and is a complete joy but get him out anywhere, library, soft play centre, church he is so hard work has to sit in a particular seat next to a particular child wants everything done a particular way.

He is very good at maths and number regognition and has an obsession with the figure 19.19 and has to be in bed for this time and if he misses this time on his clock he goes into meltdown mode!!!

At his first parents evening in October I didnt want him to be labelled so I didnt mention the Aspergers word and neither did the teacher but she did mention the routine aspect and at this parents evening although certain behaviours have improved the routine aspect hasn't. I then asked her outright if she thought it could be aspergers and I could tell by her face that she thinks it is very probable but he is very young to be diagnosed. But she said 'it isn't her place to say, but there is a high possibility!

He has also been having speech therapy as he finds the 'f' sound difficult and his ST phoned me yesterday as she has only met him once and she noticed his strange behaviour quirks, another of them being a little high pitched voice he talks with sometimes and when I mentioned Aspergers again 'not her place to say' but would I like a referral to a paediatrician.

But people are telling me he is young and he may grow out of it and don't label him, and he will not be able to get a diagnosis until he is 7 but surely the earlier he gets diagnosed (if it is aspergers) the earlier he will get help with coping strategies!!

Any opinions from other parents who have children with aspergers and those that have gone through the diagnosis procedure, would be greatly received.

Thank you x

or equally opinions from parents who thought there children (like me) had aspergers and after referall found out they didn't and have improved and grown out of it!!!

My DS was 5 when diagnosed, so I'm not sure where the waiting until the age of 7 for a diagnosis comes from. Obviously it depends how easy it is to categorize.

I would certainly be seeing a developmental paediatrician in the circs you describe and ignore any naysayers who talk about not labelling him. What these people fail to realise is that these children are already labelled as being "different" and such differences more often than note get blamed erroneously on parenting.

Use a label purely as a signpost to seeking more help; it can also open doors that can otherwise remain closed off to you. Do not be afraid of labels!.

Also as your son goes up through the school and into Juniors his social and communication difficulties may become more apparant. In your situation I would start applying now for a statement for your son due to his social and communication difficulties as such can go onto affect their ability to learn. You need to also think longer term because Junior school in particular can be a lot different to Infants and harder for those children who do have such difficulties due to their difficulty to read unwritten and unspoken social cues. Do not allow yourselves to arrive at the potential situation whereby he is bottling up all his frustrations of the school day only to take it out on you when he gets home.

Your situation was exactly the same as mine. After his teacher brought the subject up i had a feeling of relief that it wasn't just my imagination or i was being a worrying mother but then the reality hit me like a bus. I had a few weeks of grieving like emotions then i pulled myslf together & put the wheels in motion. First i organised a meeting with his teacher & SENCO. We discussed issues they were having with him & came up with an IEP. The SENCO was then going contact the educational psych & we are currently waiting to hear back from them. I also went to the GP & requested a referral to see a Paediatician based on my history of my concerns & the concerns of his teacher. (Warning: Depending on GP they have been known to shrug concerns off & mine was about to do the same unil i mentioned the meeting with the school SENCO). We've had our date for the paediatrician through now at the end of the month so we are preparing ourselves for the next part of the emotional rollercoaster.
I think if you can get the necessary support from the school its a huge help. I feel so much more positive about it all since its been discussed & my son seems to be coping better since new ideas have been put in place.

Hi Peppajay, we had our first referal meeting with the paed earlier this week. I went through the school to organise this, I asked for an appointment with the headteacher and took in a list of my reasons. She was very helpful. (I had previously seen the GP who told me my DS was "very intelligent but naughty"!) It sounds like the school are wanting to support you so I would go ahead if I was you, it has been such a relief for us. To go from being the 'bad parent' with the 'naughty' child to not only being taken seriously but also helped and understood has had a massive impact on me and as a result the family.

Good luck, your DS sounds like a sweetie.

OMG jellyrolly that GP was so out of line. If your son does get a diagnosis i'd be writing a stern letter of complaint to there superior. It's that kind of pig ignorance & crap attitude that makes our situations so much more difficult. I tried to get a referral through school at first but they advised me to go through GP as school system takes so much longer. I guess it differs in each area. How was your 1st paed appointment?

Thanks everyone think will go ahead with the referral sounds if I am lucky to have been offered one and makes me think that there are quite a few professionals out there who think aspergers is very likely as when Mention it they seem to agree. My DH is very very anti referral as he says let him be. my DH iis dyslexic and I also think very possibly aspergers and he detests people knowing about his dyslexia and having a label unlike a good friend of ours who tells everyone 3 times in every sentence that she is dyslexic!!

I hope it goes well for you peppajay, the school does sound supportive.

Thank you for asking Hallybear. Our first appointment was a real eye opener, you will probably understand this but most people don't. There are very few places I can take my DS where he is not considered naughty or either he or I are made to feel uncomfortable due to his behaviour; the doctor was so lovely to both of us and so used to talking to children like him I just wanted to stay there for ages! I was quite tearful just watching my DS being spoken to like the beautiful, intelligent and wonderful boy I believe him to be. I feel like we are at the beginning of a time when he can be understood and his life can get easier.

Peppajay, my husband is very up & down regarding the whole situation. He's accepted that something isn't quite right & has been supportive with the referral but then seems to stick in the sand when it comes to our DS's actual behaviour & traits. I think he feels powerless & frutrated that this is happening. I'm just hoping there will be support for us along the way to help us deal with everything as you probably know there are days when we crumble under the strain as well.
jellyrolly your appointment experience brought tears to my eyes. I've got such mixed feeings over the whole diagnsis process. After reading dozens of posts saying its taken 2 years to get an answer, i've set myself up for it, thinking theres going to be dozens of appointments, reviews etc then the other day someone mentioned they had a diagnosis by there 2nd paed appointment . I guess thats a good thing in one way butthen i thought how can such a major life altering thing be decided in such a short time. I came to the conclusion that i'm scared of the results. I was hoping it was going to be a long process to kind of delay the inevitable which is just really selfish of me. Sorry or moaning on, think i'm having a down day today.

I understand the rollercoaster Hallybear it's like stepping into the unknown. My DH is similar, generally tries to be supportive but then gets angry and upset e.g. when he gets bitten! It's a stressful process for the whole family and not made any easier when friends and even relatives don't understand.

I think you have to allow yourselves times when the constant positive face and patience runs out, especially today on mothers' day. I'm sitting in my bedroom having left the three of them to eat their tea (cooked my me of course) as they have all been rubbish today (DH and DSs). I intend to feel sorry for myself for the duration of the evening. Maybe someone will come upstairs with chocolates eventually