Son 15 asperger diagnosis follow up

[bains]

I posted last week with regard to my son who is having severe mood swings and has been recently diagnosed with asperger. He avoids any contact with me and just wants to stay on the computer all the time even started violence toward me.

 

 

I also posted that he is getting really stressed by the idea that GCSE is important and the anxiety levels are so severe that he is finding it difficult to work.

 

 

This week I went back to the CAMHS office and the psychiatrist said that he could be treated with CBT and a combination of family therapy and that this works as well as the medications and to trust him.

 

 

If my son's symptoms are having a severe impact on his life surely the doctor can prescribe something for the mood swings, severe anxiety around work, social anxiety. I find it a bit suprising he is not doing so but don't have much experience in these matters.

 

 

Does anyone have any further experience or input.

 

 

Thank You

[JeanneA]

Hi bains, it sounds like you have had a lot of good advice so far from CAMHS. Do you know when this CBT/family therapy will start and also has the psychiatrist put your son on any meds yet? I'm not sure if your GP would put your son on any meds until the psychiatrist has done so, this is the normal pattern, this happened to my son, it was the psychiatrist who put Glen on meds then the doctor could issue repeat prescriptions etc after then. In my son's case the we saw the psychiatrist regularly so she could monitor how the meds were going, if they needed changing, or the dosage needed altering.

[bains]

Hi Kilmanjaro

 

I do not know when the CBT therapy will start but quite soon he said, the psychiatrist thinks my son does not need meds. However I am unsure.

 

Thank you

[JeanneA]

Hi, i'm surprised that the psychiatrist thinks your son doesn't need any meds, as by what you are describing I would have thought that he may need something to help him. particularly with the anxiety. In the that case it might be worth you making an appointment with your G.P. to ask his/her advice.

[bains]

Hi, what medecines would you consider to be the safest for anxiety with the least side affects generally. Does anyone know?

 

Help desperately needed.

 

 

Thanks

[Lyndalou]

Hi Bains

 

It sounds like you are making some progress but I appreciate your frustration because even a short wait seems like a long time if you are in crisis. The thing with medication is that it can work differently (or not ) for different people. Whatever is decided medication-wise will probably take this into account. Your son would probably be started off on quite a low dose and initially there could be some adverse effects or very little apparently 'happening' for around 3 weeks and then when things settle the dose would likely then be increased or it could remain the same. There is a school of thought that people who are on the spectrum are sensitive to medication just the same as they are sensitive to many other things and some people (like Temple Grandin) advocate cutting the dose in half of what would 'normally' be prescibed. I don't know how many Psychiatrists accept this line of reasoning but even so, if a lower dose is having the required effect then that is all that will be given.

 

When I have been on medication, I have been prescribed 20mg of Citalopram and for me this worked very well. I believe that Citalopram is prescribed quite frequently for anxiety problems and it certainly did have a 'smoothing out' effect on my emotions in that my extreme mood swings abated and I felt more in control. However, I had to take the tablets as prescribed and as my memory is poor at times I frequently forgot to take them and the side-effects of this included nausea, problems with balance and headaches (again for me as they are different for everyone).

 

Cognitive Behavioural Therapy is seen as quite a good form of therapy in order to get to the bottom of emotional difficulties but it does require the person doing it to fully commit to the process. By all accounts it is a pretty difficult therapy to undergo (I have never done it myself but have worked with people who have) as it can dredge up all sorts of emotions and feelings that a person may have suppressed and the person has to trust the therapist which could be quite difficult for them. Family therapy might be very helpful as it could be a means by which everyone can learn how to open up to each other in more positive and supportive ways.

 

A book I would advise anyone to read would be 'Aspergers Syndrome and Anxiety: A guide to successful stress management' by Nick Dubin. I think this is an excellent book with many very helpful strategies in it for people who are in the grip of anxiety.

 

Lynda

Edited February 17, 2013 by Lyndalou

[Sally44]

My son was out of school for about a year due to anxiety, which eventually developed into OCD.

 

His anxiety was making him vomit at the thought of school. At that time we did not seek medication because he was so young [10]. We were under Clinical Pyschology and CAHMS. ClinPsych, at the time, told us that my son was too anxious to engage in any kind of therapy. So he did get any therapy or medication for some time.

 

We did end up at an educational tribunal and he now attends an ASD specific school. It is for cognitively able children. He is assessed as around average cognitive ability, but I don't know what examinations he will take - he also has severe dyslexia.

 

We did decide to accept medication for him. Which has helped to reduce his general anxiety, but the OCD is still driving him. And we keep increasing the medication until it is at a level that it will start to reduce his obsessions and compulsions. We have been slowly increasing his dose over the last year.

 

I think the thing is for everyone to recognise how severe your son's anxiety is. Have you had a meeting with the school at all? Can CAHMS come to a meeting in school? I am presuming your child does not have a Statement of SEN.

 

I would arrange a meeting in school. They should involve the Educational Psychologist because they do have a budget for that. I would put your request for a meeting and the reasons for that meeting in a letter to the school so that you have on record about his anxiety.

 

How is his anxiety impacting in school?

Is he doing well academically?

 

I know that SEN legislation is going to be changing over the coming years. And that Statements are going to continue post 16. So I think it would be worth requesting an assessment towards a Statement so that that is in the pipeline.

 

I would also advise that you keep a daily diary of what your son says and does. And that on your next appointment with CAHMS that you give them a copy of it and ask them specifically how much force you are to use to get your son into school. Because he sounds like he could be on the verge of refusing to go.

[bains]

HI,MT Mckinley and all

 

He does do the subjects he enjoys like chemistry or physics or maths but does not want to do the longer essay type subjects like English 1 200 words or extended project which is about chocolate and needs to be 1 500 words. These in particular are causing anxiety and avoidance.

[Sally44]

Those on the spectrum MUST have speech and language and social communication difficulties to get a diagnosis in the first place. Part of the difficulties with an ASD is that some can really struggle with non-fictional writing [due to poor imagination]. They often have executive function difficulties [have a look at http://www.schoolbehavior.com/disorders/ which explains alot of disorders very well].

 

He may really struggle to understand what is expected of him ie. what the question is that he has to answer in the essay. He may have problems with organising thought, staying on topic, sequencing thoughts etc.

 

He may have physical problems due to dyspraxia etc that cause him to get hand pain or muscle pain due to the amount of writing.

 

May ASD specific schools do not even put their pupils in for english language or literature examinations because they just would not get a good result.

 

And I think that anyone placed in that situation where there was pressure to do something they could not do, or really struggled with, would get anxious about it. And it needs to be taken seriously.

 

I would ask school for a meeting, and ask them to involve the LA Educational Psychologist. Find out who they are and phone them and speak to them about his anxiety and how he is struggling with English Language and forthcoming examinations.

 

If he has a diagnosis the school can apply for him to have extra time due to his diagnosis. Again school should be thinking of all this, but often parents are left having to find out about it all and get school on board.

 

Again, I would seriously consider writing to the LA and asking them to carry out a statutory assessment of SEN. Ask them to have your son assessed by the EP, Speech and Language Therapist and OT. The LA may not have any OT, so I would also advise that you visit the person who diagnosed him, and ask for a referal to OT. It can take months or even years for OT.

 

Again put this request to the LA in a letter.

 

Once you find out who is going to assess him you must phone them and ask them to carry out Standardised Assessments as these will identify his strengths and weaknesses and will give you an age related score or percentile score from which you can measure progress, and those scores will also indicate how much support or therapy he needs.

Edited February 18, 2013 by Sally44

[bains]

Thanks Mt MCkinley,

 

 

As he is in an independent school would the same procedure above apply.

[Sally44]

Are you saying that your son is already in an independent school?

Or are you asking whether he procedure I followed would be the same for a child in mainstream?

 

If your child is mainstream, then here is a link to the SEN Code of Practice as it currently stands http://media.education.gov.uk/assets/files/pdf/s/sen%20code%20of%20practice.pdf

Read through the relevant chapters [i think 7 and 8].

 

Any parent of any child can ask their local authority to carry out a statuory assessment towards a Statement. You don't need any other professional to agree or do it for you.

 

Is your son on School Action or School Action Plus with IEPs at the moment?

Edited February 18, 2013 by Sally44

[bains]

Yes my son is already in an independent school I have seen the sen co ordinator but there is no IEP plan although she is aware of my concerns.Can I still go to the LA as you suggest.

[Sally44]

Is he LA paying for that independent placement or are you paying for it.

 

Is the independent school ASD specific?

[bains]

I am paying but it is not asd specific although they have experience and a few people with Aspergers.

[Sally44]

Okay. That makes things harder in some ways because the LA is not responsible at all for his education as you have taken that over yourself.

 

What I would say is that you should arrange a meeting with the school SENCO and discuss his anxiety [general and specific about exams]. They can ask for extra time during examinations for him. They can also ask that he is allowed to use a laptop or a reader/writer if he has difficulties with those things.

 

What professionals does this independent school have on site, such as speech therapist or occupational therapist or educational psychologist? If they dont have anyone on employed on site, can they get advice from any of those?

 

If you can afford it the other way you could go is to get a private SALT or OT or EP involved, and for them to visit the school [hopefully with the school fully on board], so that they could observe and assess him and make some suggestions on ways that his work could be differentiated and his environment could be low arousal, and maybe the OT especially could deliver some therapy on site in school to work with his anxiety which could be sensory based.

 

SO I would talk with the school about what his difficulties are at the moment. And although you may not be able to access professionals via the school, you could via the NHS. So you would need your GP to refer you - which I assume you have done if CAHMS is involved. It is about getting them to work together to meet his anxiety.

[Sally44]

Another thought is that you could consider a reduced timetable. If there are subjects he is really struggling with and will not get a good grade, or maybe any grade, then talk with the school about dropping some subjects.

 

Are the school using any examination papers to prepare the children for their exams. This can help reduce anxiety [unless they find the examination questions too difficult or cannot interpret what the examiner is wanting them to write and include].

[bains]

I can't really afford to get a private SALT (what does the latter mean?) invoved or Ot or EP as he got in on partial scholarship but will try your other suggestions.

[Sally44]

SALT means speech and language therapist.

 

Try via the school to see who they can involve.

And try via the NHS to see what input they can give to school even if it is telephone contact. My son's school did go and visit the NHS Clinical Psychologist to discuss approaches and strategies they could use regarding his anxiety.

 

I would also suggest you have a benefits check. Do you claim DLA for your son? I would get advice from an organisation that can help you complete the DLA form. There is a 'care' and 'mobility' element to DLA. I've recently ask for my own sons DLA to be re-assessed and he now gets high rate care and mobility, which is around £500 a month. That could cover the cost of an independent/private professional. You need help completing the form because you need to know what kind of things they are looking for. For example my son can walk, but he has an Anxiety Disorder and OCD, so he will refuse to go out of the house, will have panic attacks and get very upset or run away. He has to have a door to door service to go anywhere. He won't go on buses. He has problems with using public toilets, the list is endless. But now it is recognised via his DLA that he is not mobile and that we need to take alot of things with us when we do go out in the car such as a change of clothes, wipes, hand gel etc etc. So do claim for that.

 

Once you have DLA that allows you to claim for other things such as council tax benefit. Or to claim as his carer [i don't remember what they need for you to claim as a carer - just that you have to care for that person for at least a set number of hours, and if you work that you do not earn above a certain amount each week]. And DLA or his diagnosis should allow you to claim the disability element of Working/Child tax credits which is about £2K plus. These are things you are entitled to, and if they help you afford to help your son it is worth claiming them.

Edited February 19, 2013 by Sally44