adhd and suspected aspergers in 12 year old

[ilovemyhens]

We have totally struggled with ds1's behaviour/difficulties since he was about two years old.

I tried to seek help via the GP, but was always just fobbed off. The school referred him to CAMHS when he was in Reception Year because he was so awful. School were given a support worker and ds1 eventually learned how to behave in school, but we continued to struggle at home.

When he was nine I had him assessed privately and was told he did have adhd, but was coping well, so only parenting strategies were recommended.

Saw CAMHS again last year after a second attempt to get help from them and they said that he doesn't have adhd, was showing some signs of aspergers, but didn't want to assess him for aspergers

He is now 12 and continues to struggle with social relationships and life in general. His intellect and school attainment is very good and he's bright.

Some of the things he does are:

Talk non stop about his favourite subject, history
Doesn't seem to understand that we can't cope with endless talking
Soils himself if he goes into the bath - has to have showers
Makes silly noises
Talks extremely loudly
Sings to himself and has to make a noise all the time
Needs to stick to an expected routine
Struggles if this routine is deviated from
Asks questions all the time about how long things are going to take and what time it will happen
Is obsessed with buses, esp. the bus that he gets to school each day
Is very immature in his general behaviour, but quite mature about his school subjects, religion, politics etc.
Terrified of new social situations and just doesn't 'fit in'

I have read about the characteristics of aspergers and much of his behaviour fits. He can make eye contact with me, but struggles with people that he doesn't know. He does have some empathy with others, but this is mostly superficial.

His adhd symptoms appear to be either diminishing or are becoming more manageable, but the other problems persist and I'm worried that he does have aspergers.

We receive absolutely no help/support and I'm worried about ds1 because he came home from school on Friday to say that his friendships at his new school are breaking down and only two people in his tutor group are speaking to him now. I think he may have upset some people because he's a real wind up merchant and is generally irritating and 'difficult'.

How can we get CAMHS to take us seriously? They just fob us off and say it's a parenting issue, but our parenting has been assessed and it's been deemed fine and also ds2 is completely normal and doing well.

ds1 is just 'odd', but how can we get them to see it?

Some of this sounds like my DS who was diagnosed with Aspergers at 12. We are lucky in that DS' school has a lot of experience with ASD and related conditions.
Have you been to see the school SENCo? We got a diagnosis through the Community Paediatrician and the Educational Psychologist after referrals from school. There should be things school can do to help him with his peers.
Our experience with CAMHS is limited to family conselling when DS hadacute behaviour problems and it wasn't very helpful.
After diagnosis our GP (one man band) said he had only one other patient with Aspergers in the Practice so didn't know much about it. Perhaps your GP doesn't know much about it either.

You aren't local to me are you? My local cahms is not fit for purpose unless that purpose is to actively block my child from getting the help he needs, either via themslves or any other agency he's been referred to.

An "alternative route" is via an Ep - to do this you have to persuade, (beg) the school to call them in to observe. They can then, in conjunction with the GP refer you to the multi-disciplinary assessment route via the peadatrician and SALT so bypassing those lovely bods at Cahms altogether ; )

Although CAMHS have their place the whole area of ASD is not their main forte at all. You'd be far better off avoiding them altogether and insisting to the GP that you are referred to a developmental paediatrician.

EP can observe your son in school and make educational recommendations (their visits to school however, are as rare as hens teeth) but such a person cannot make any diagnosis.

Thank you for these replies. I'm relieved that I'm not the only one who finds CAMHS absolutely useless We've been given the run around for years now and we're totally exhausted with it all.

I shall speak to his form tutor to see if she's noticed anything. She's only known him for a few months, but she may have noticed some things. The problem is that ds can keep himself under a fairly good level of control whilst in the company of others. It's when he's relaxed and feels comfortable that he lets himself go and his true colours come out. He may be able to keep a lid on things whilst at school, but I'm sure that they must have noticed something and his friends certainly have because they've dumped him

We have only ever seen social workers and nurses at CAMHS, never even seen a doctor about all this, so perhaps that's why he's been slipping through the net.

My husband's nephew has add and even he can't stand being in ds1's company for very long because of the way he goes on. He was practically frantic when they came to visit at new year and nephew stayed over at our house.

I shall try and get school on board then re-approach the GP or get the SENCO to try and help with an appropriate referral.

Another thing that I thought of is that he has numerous tics as well.

DS has tics too, but the Paed said not to get too hung up on those because they come and go.She was right. He can go ages without any and then another one appears when he is stressed. He is in the run up to GCSE and is doing various hand flapping movements which are easier to ignore than vocal ones which tend to be coughs or squeaks.
Can definitely see some similarities, but my DS does good eye contact, or at least seems to. I think he probably does what I do and looks at a person's mouth rather than their eyes. I'm not a good judge of that one. He doesn't look away from the face altogether as some Aspies do.

ds used to do hand flapping, but that's largely stopped.

What form does the aspergers assessment take? When he was with CAMHS they went into school to observe him. The teachers played a lot of his symptoms down, but two weeks after he was discharged from CAMHS he was attacked in the playground by a parent helper because she was so pissed off with him

The school told lies about his behaviour and diminished all my concerns. CAMHS couldn't take us seriously because of this and just put it down to parenting deficits. The only person to take us seriously was the parent support worker who could see that there were obvious problems and that we were coping as well as we could under the circumstances.

The private paed whom we saw for his adhd assessment was great and took everything on board and seemed switched on and intelligent. It was too far from where we lived for me to attend any follow up appointments, then my dh was made redundant - largely because of the stress of looking after ds1 - so I couldn't get them to do an aspergers assessment. The clinic was at the other end of the country and was a struggle to get to.

I see other children/parents receiving help and support and just feel so resentful about the way we've been treated.

My DS (13) was seen by CAMHS last year and got an ASD PDD diagnosis. We always thought he was odd, but didn't consider ASD because he has no problem with eye contact, and is very chatty (mainly with adults). (My perception of ASD was of a withdrawn, uncommunicative child.) However, as DS has got older he has become more rigid in his behaviour and more isolated, dropping all the activities we tried so hard to keep him involved in. He has no friends, except one boy he used to play with in primary school who now lives several miles away. There was no follow up from the diagnosis, but CAMHS referred DS for social skills training (this was several months ago and I don't think we'll get anything soon). The most useful thing for us was seeing a private Ed Psych, who said many of his traits were common to Aspergers. She has given us a list of recommendations for his education, and we are trying to get a statement. Like your son, DS keeps himself reasonably well controlled at school (though kids do perceive him as 'weird', and he gets a lot of stick for being completely unsporty - he's scared of physical games iike football), so school generally don't see the problems. At home, he's surly, glued to the computer, and hates doing homework, and says he hates school.
Is there an Autism support group near you? They might be a good source of info about what help there is available in your area. Good luck!

I would recommend reading Tony Attwoods, complete guide to aspergers, they will probably have it in your library.

It is easy to read and not too medical.

Dd3[8] is being assessed by CAMHS in our area and we have had a different experience to you, they have been the first people to really take us seriously.

Our school have lied to everybody involved with Dd3.

I have found the best way to be taken seriously is by keeping a diary.

We record all incidents of unusual/quirky behaviour and tantrum/meltdowns.
We record times, dates and how we dealt with the issues.

I have found since I have been doing this people have been better at listening to my opinion.

Good luck.