First CAMHS appointment - how do I get them to listen?

I think you've gone a long way with identifying evidence in your postings. As others have suggested, write down instances of behaviour. In your second posting the paragraph about dropping pencils, how he grips them,  forgetting to go to the toilet etc., are worth recording so you can explain these.

Once you've got a record of evidence written down it will be easier to provide the right explanation when the time comes. You may find there are differences between how he behaves at home and how he behaves at school. School provides a framework for daily routine, but also he may be reluctant to show himself up in front of other children for fear of being made fun of. He may therefore unleash the stress at home. It could be useful to record any such differences between home, school and other environments.

It would be worth trying to get more facts about what goes on in school. Being different and feeling as if from another planet will make him feel bad about himself, but how his fellow pupils deal with this could be important, such as mocking or bullying. These might be relevant to fears about school, suicidal notions and changes in home behaviour. Write it down.

There is a useful book, if you can track down a copy, as it was published 14 years ago, but it is still useful insight into school life for parents: "Martian in the Playground - understanding the schoolchild with Asperger's syndrome" by Clare Sainsbury (Lucky Duck Publishing 2000 - ISBN 1 873 942 08 7 )

The book is very insightful, and explores different school related environments in a way that could help you set out your concerns. It covers the classroom, the playground, the lunch queue and the journey to and from school. It is well illustrated with quotes from children on the spectrum. Clare Sainsbury used to provide a forum for students on the spectrum, and collated a lot of valuable information.

Thank you.  I really appreciate the help and support and practical tips.  I am, understandably perhaps, very emotional and it has really helped me to get my thoughts in order and calm down by seeking your advice and writing things down.

At the moment, I just have so many things flying around in my head  - and many people who live locally who have gone through the CAMHS experience urging me to be vociferous and expect the worse. 

Thank you.

I asked about family history as it can help to understand this when dealing with the professionals. If one did not realise that one was autistic then one might, without realising, get on the wrong side of them and spoil your son's chances of getting the right help. It doesn't sound as though that is the case here but it helps to know more about the circumstances.

Your primary goal here is to put a stop to your son's suicidal thoughts. This is your goal rather than getting an ASD diagnosis. IF it means getting an ASD diagnosis or any other assistance then you need to make it clear that this is a very serious issue that needs to be tackled. You suspect that ASD is at the root of this but you can't afford to be fobbed off with a diagnosis and a few fact sheets.

Unfortunately mental illness, such as your son's anxieties and desperation, are a common consequence of ASD. However, if the root cause is understood and dealt with then the outlook is bright. CAMHS are definitiely the people to sort this out.

Thanks for your replies.   In terms of family history, there is no one that has been diagnosed and no one in the immediate family that is quite like Frankie.  Him and his dad can be quite similar in some respects, but then my husband suffered a trauma at the age of 9  (a stroke during open heart surgery) which has resulted in some coordination difficulties at times, when he's tired etc.  In any case, we have a child who has difficulties and we have to try to help him.

Of course I don't want to have to coach my son into anything - but it precisely for the reason you say - that you have come away from CAMHS with nothing concrete - that I want to make the most of any meetings we have with them.  I don't feel that a parenting course will ultimately help children with ASD become adults with ASD that have the skills and abilities to have an equal chance as others.  It's the child that has to live with their difficulties every day for the rest of their lives, not us parents.  It is not parenting skills that will miraculously 'cure' the child with ASD to make them function 'neuro typically' or 'normally' - they will still have the difficulties they have.  No doubt parenting courses to offer strategies to manage and cope at home are very helpful, but I would rather they complemented a conclusive diagnosis, rather than be the limit of the help given.

My son is not at the totally inward facing end of Autism - he can respond when people speak to him and he doesn't like talking about aspects of his personality that embarass him - such as still wetting the bed, not being able to make it to the loo in time during the day, sensory issues such as sensitivity to some clothes, certain sounds, smells.  He knows he is different and is ashamed of it, hence he does not want to talk about it with strangers who he fears will laugh at him and judge him.  Which let's face it, is what the doctors are doing.  They need to make their professional judjement, but there's only half an hour to convince them of a whole lifetime of issues.

I know the waiting lists are long, the needs are great and the pressures to cut costs everywhere is leading to treatment for only the most severe of cases.  But it doesn't make my son or any other child that is denied the chance of a proper diagnostic assessment not have ASD.   

If, after your meeting, anything extra occurs to you that you think they should know, or you think there has been any misunderstandings, write to them. I have used this method recently, after meetings with my community psychiatric team and they arranged a second meeting to discuss my concerns. If you write to them, it will be held on file, so they will be aware of your concerns.

If your son has asd you shouldnt have to coach him into anything and why would you want too?

We did see cahms and yes i did get what i asked for,however even though it helped a little,i feel like i could have done with a lot more.

I asked for strategies and help and what i got was a 6 week course with other parents of children who have asd/traits, every parent was discharged at the end of that 6 weeks with cahms basically saying theyre hand were tied,to which a lot of us felt dedjected.

Your second post has filled in a lot more detail and given a much better picture of how you are dealing with it. I was a bit afraid that you were getting ready to go into battle.

Your description makes it very clear that he is well down the autistic spectrum. He is also struggling with sensory issues - this is a common issue that comes with the autistic package.I think you could present your posts as a good succinct description of the problems he is suffering from.

Have you tried giving him ear defenders to let him cut himself off from the noise?

Another common issue for ASD sufferers is poor coordination so PE itself may be a trial for him.

Autism is frequently inherited. is there a history or evidence of other sufferers in your family?

Hi - thanks for replying.  I appreciate it.  All opinions are welcome!

Being aggressive does not come easily to me and it's not my way of doing things so it's certainly not my preferred option.  Good to hear an opinion that encourages the calm, measured and rational way. It just hasn't got us very far to date. 

I don't mean to imply that my son displays particularly disruptive behaviour at home or at school.  The punching of the window at home was a result of a build up of frustration over dinner time and was a shock to all of us, including him. It's true that over the past few months, he has become more physical at home with his little brother and with me, and in throwing himself around when he's upset.  He has also talked in detail about suicide and has planned it in some detail.  That's why I am desperate to get help. 

He tells me that he hates school - it's too noisy, he finds it difficult to concentrate, the teachers are too strict and he doesn't get enough time doing the things he thinks are important.  Despite this, he is not falling behind, but it is a struggle for him.  He has recently trasferred to Junior school and the anxiety has peaked.  I guess not all children like school or feel comfortable in that environment, ASD or not.    He says that he hates his life and feels like an alien from another planet - apart from when he's with me.

With him it's more about the anxiety, frustrations at not feeling understood, problems with social interactions  and his repetetive behaviours.  His school are supportive of pursuing as ASD assessment as they appreciate some of his difficulties and see that these are impacting at school. He struggles to sit still, so he has a wobble cushion, he keeps dropping his pencils and has poor pencil grip, he is very anxious, he appears as if he's lost in his own world (but he is listening), he hides in the cloakrooms at lunchtimes, unless he can make the same lego models, he forgets to go to the toilet, he can't manage to get himself dressed for PE etc.  

I am the first one to admit that we are not perfect at home and can be inconsistent at times, but I've yet to meet anyone that doesn't make mistakes.  We are certainly prepared to make changes at home  - I have recently resigned from my  job and put my career on hold  to bring more stability to homelife ( I have always worked full time).   My husband and I have always juggled work and home to keep external childcare to a minimum and so that we could keep to our routines.  But there is always room for improvement.

I will write everything down and use that as a prompt, and hand it over too, in case I get side tracked. 

Thanks

If you go in aggressively then two things might happen

1) you will just annoy the people you are trying to persuade

2) your behaviour may rub off on your son and he may have a meltdown or generally misbehave. They won't be able to assess him if he is worked up. Autistic behaviour shows up more clearly when someone is calm and there is no riotous behaviour to obscure the picture.

Prepare yourself with all of the stories about his behaviour that you think might be relevant. Write these down and be prepared to give it to them to help make your case.

If he misbehaves at home then are you prepared to take a long hard look at what happens at home? Is home life consistent and predicatable and fair from his point of view? Does he have space to go and be quiet? Are you unreasonably reasonable when you discuss things with him or do arguments develop and do the house rules get applied differently from one day to the next?

In my opinion, (other opinions are available!) school suits a lot of autistic children because the rules are clear and applied consistently. Good behaviour and bad behaviour is identified and rewarded fairly from day to day and life doesn't have a lot of unexpected shocks and surprises which will unsettle an ASD child.

Can your son articulate the things that get on his nerves? What does he say about his life?