Please help me.

[stupidgirl]

My ds is now 6 and I had suspected Aspergers.

Hving gone down the road of seeking help and 'treatment' we have a child development dr of some kind saying that it's not aspergers, it's behavioural problems. She thinks he's attention seeking and controlling. she wants to refer us to a mental health service.

The speech therapist who came out to see us thinks there are asperger related symptoms, but not enough for it to be aspergers.

I just don't know what to think any more. I don't believe he is controlling, or attention seeking, I think he's trying to maintain control over his own life - and sometimes that has the effect of controlling the rest of us. I also think he has problems understanding and accepting (and controlling) his feelings, and problems understanding other people's feelings.

I just don't know where to go from here. I am going back to see the dr on my own to try and change the misonceptions I believe she has, but I can't help feeling that I'm fighting against the tide. She wants to get all these different agencies (including social services) involved and I am frightened of losing control. My parents went through very similar problems with me, and I very nearly ended up being locked up in an institution.

I'm sorry for this being long and incomprehensible. I'm frightened and I need some support and advice. How can I help him with feelings and emotions, and how can I try and change the behaviour????

Please, any suggestions are very welcome right now.

Stupidgirl - I have no advice I'm afraid but wnated to say that I can understand how frightenend and upset you must be

Is it worth posting this on an SN thread - the SN mums are so lovely and always ready to help and they might spot it more easily if it is on one of the SN threads.

Lots of hugs and I hope you get things sorted out soon.

I think The Heart of Parenting by John Gottman (the Emotional Intelligence guy) is a really good book and is all about teaching children about emotion and how to stay in charge of their emotions so they enjoy and experience and understand them but aren't ruled by them. I found it a fascinating, child-centred read with good ideas on how to talk to children.

I use some of the techniques with my ds, with success.

stupidgirl, I haven't really got much advice, just has to post to say how sorry I am for this scary and upsetting situation you are facing.
I don't agree with everything he writes, but Steve Biddulph's books on raising boys have some good tips for getting inside the young male brain.
I know you must be devastated - but please don't think that because you lacked understanding and support when you were a troubled youngster, that your son will also miss out. He's got YOU, you are in a position to understand some of what he is going through. You're a thoughtful, loyal and caring mum. And you have Mumsnet, something our parents didn't have. Agree that posting on the SN threads is a good idea, there is such wisdom on behavioural issues there.

Hi Stupidgirl. Did the doctor/SALT actually say which 'bits' were lacking for an AS diagnosis? Sometimes when a child doesn't quite meet all the criteria a doctor will diagnose PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified).

It might help if you were to treat your ds as though he does have AS. There are lots of techniques that you can use to help him get a feeling of control over his own world. If he likes/needs to know what is happening in advance in order to feel secure then you could try using visual timetables. These have made a huge difference to my ds1 (4yrs). To help explain things like emotions (including other people's) you could try using Social Stories. These are simple stories written in a specific way to help children learn/understand about a whole range of things.

Who is the "child development dr" - what's her exact title? Many couldn't recognise AS in a year old if their life depended on it. I remmeber seeing a programme on channel 4 about a boy who was 11- who had seen specialist after specialist who had said all his problems were behavioural. I watched for 5 minutes and was screaming at the screen "he has AS for god's sake" (watching him having a haircut- dead giveaway)- anyway he WAS diagnosed as AS during the programme. So what I'm sayig is if you think he has AS from stuff you've read you may well have more idea than experts. Is there any possibility of getting him seen privately by someone that you trust so that the AS stuff can be prperly considered.

Thanks everyone so far for the replies. I will try and get that book from the library Aloha, thanks.

Marina, thank you for your kind words, very much appreciated right now :-) I've got Steve Biddulphs raising boys book on order from amazon at the moment.

Coppertop, the behaviour that ds displayed when seeing the dr and the SALT was bad behaviour. He was acting up, because he was embarrassed, and I couldn't seem to get across to them that although the behaviour is unacceptable, it's not that behaviour that I'm concerned about - it's more the reason why he was doing it. They were taking the behaviour at face value rather that accpeting that it might be a symptom of the problem, rather than the problem in itself. I'm explaining it really badly, it is so difficult to try and assess and put into words what the problem is, I just know he;s not just 'bad'.

The behaviour the SALT specified as being non-aspergers is that he was wrecking the room, but checking back to see if he was getting a reaction. She said if it was AS then he wouldn't be aware that he was causing a reaction. And making eye contact. She did say that no matter what label they put on the 'treatment' would prtty much be the same. She mentioned visual timetables, but as he reads, I think he would find them a little patronising. I'm planning to do somethign similar but with words, as I think the structure might help. I'm going to go and google these social stories, as it;s something I've just seem mentioned on the Tony Attwood site.

Jimjams, her title is "Associate Specialist on Community Child Health" whatever that means. She works in the Child development centre in the hospital.

What was the giveaway about the haircut? I have to cut ds's hair, and even that is fairly hard work. We couldn't get shoes fitted last week because he refused to let the woman near his feet - later he says he didn't like the lady.

Anyway. The next option I think is going through my GP for a referral. I don't get on with him all that well, but he was wonderfully supportive to my parents when they were in a similar situation, so may be sympathetic. Otherwise I wouldn't know where to start looking for someone to assess him.

bump

BUMP

just bumping you

bumping you too!!! my ds4 is over not labelled but i call him oversentive disorder and really would recommend preparation. I cannot get him to do anything without preparing him in advance we even give him a 3 minute, 1 minute warning for meal times. He was also a nightmare for years for haircutting, nailing cutting and his sound tolerance is very low too. But.............
i have to add that I am nearly 40 am also sound and light sensetive, cant even bear the thought of anyone (adult) cutting nails, it makes my skin crawl and have always been an obsessive multi tasker before they invented the phrase does this mean i have ASD and if so are the signs i see in my child the same?????