Aspergers/ASD support thread

rainbow81

concerned43 wrote: »

My DS is 13 and has had difficulties all his life - he stopped eating when he was 1 yr old and was deaf for about a year (think he had glue ear) so he did not start speaking properly until he was 10. Akward in social situations, showed no empathy, 90% of what he says comes from films/TV shows that he has seen - he remembers every line!
He has never had a full night sleep in his life - he is never tired! He was diagnosed with dyslexia and dyspraxia when he was 10 and was referred to CAMHS in October 2011 due to suffering from extreme anxiety and sleep disorder.
He was at CAMHS last week and I was allowed to sit in for the first time and he was given a series of pictures of people and asked to say what the person might be feeling - he only managed to get one right. He was also shown another series of pictures which had 'think bubbles' in them and asked to say what he thought the people were thinking - he did not even attempt to answer. He was given a series of scenarios e.g. "paul and stuart went into the library, stuart wanted some books and paul said he would put them on his library card as Stuart did not have a library card but stuart said no and put the books inside his jacket and walked out of the library with the books. Do you think what stuart did was the right thing?" my DS said yes! out of the five scenarios he only got one correct.
I was really shocked at this and I was also shocked that CAMHS were doing these assessments as I was not told. I met the physcologist on Tuesday and she told me my DS has autism but there will be further tests in January to determine the level but so far the test suggest ASP! she said we have to be very careful about formally diagnosing my son as the diagnosis will be with him forever and do we want that?
Due to my DS's severe anxiety I don't think he is in a position to handle another 'label'. Could anyone tell me the positives of having a formal diagnosis?

Hi Concerned43. I am not on these boards much but pop in now and again. I am mother to an 8 year old with ASD, diagnosed age 5.

I understand that there is a choice given to parents to go through with a full diagnosis being made, or not. It is going to be your choice but my perspective is this: if it means your child will receive more help, medically, educationally, and socially (and possibly financially) then why wouldn't you accept the diagnosis? The professionals will be able to do it without telling your son and you can do that when the time is right as he has so much going on at the moment. You could also consider whether the anxiety is building up because he is realising that he may be different to other children but not know why.

On the other hand, if your son is managing ok in school and has a small friendship group, can cope in everyday situations and long term (secondary school, college, uni and the rest of adulthood) then IMO a diagnosis is not necessary. Sometimes people are on the line of having traits which they can cope with, without having many difficulties.

At the end of the day it is up to you. The Psychologist sounds quite negative from what you've written here, and it is important to remember that though they ought not to, they may have their own agenda regarding formally diagnosing your son (I have found it is quite often financial). It took 2 and a half years of me trying to get my son diagnosed professionally and the best thing to come out of it was the way the school dealt with his behaviour. He was no longer "naughty", and when he did have a less than compassionate teacher I had the back up of the diagnosis to spell it out that he NEEDED more help than he was getting.

HTH a bit. It is your decision, and if you choose not to get the diagnosis now, there is nothing stopping you from starting the process again in later years if the situation changes.

concerned43

My DS is hardly at school these days because of his anxiety and the number of appointments he has with CAMHS- he is a target for bullies and comments from peers - which deeply upset him, even tho the comments are not detrimental my DS has difficulty interpretating there meaning. The school is hopeless and say there is nothing wrong with him!! I did apply for DLA for my son and the school report said that my son was doing well and had no needs!! so DLA turned down.
I worry about a dianosis being on record and that would make any future employers hesitate in hiring him - also what happens when/if he meets a girl, won't him having autism put any potential partner off?
basically I am worried about his future - he wants to be an engineer and would be gutted if he did not get into university. which I doubt he will as he will never get his English GSCE as he cannot write an essay or understand a book!

julie03

having a "label" doesn't mean the word is stuck to his forehead for the world to see. it is totally up to you and him who you tell.

having an official diagnosis opens up a lot more doors for you and him, educationally especially, he will get more help and uni do loads of help for autism, the support group i go to two of the mums have children in uni and they are both doing well, socially its hard but it always will be.
As for the jobs situation, if he is awkward in interviews at least a diagnosis would explain it and any future employers would look more at his qualifications.

i wouldnt hesitate in getting a diagnosis, i think my son is doing better for his.

Flyboy152

What reason did CAMHS give to bar you from the sessions?

concerned43

Flyboy152 wrote: »

What reason did CAMHS give to bar you from the sessions?

They did not bar me - its just that we were seperated as I was interviewed in one room and him in another.
When I first went into CAMHS they asked what I was hoping to get out of CAMHS and I said I was hoping that they could help my son with 'coping strategies' for his anxiety and help with his sleeping disorder. I thought when they were interviewing my son that they were trying to get to the bottom of his anxiety. I did not know that they were carrying out an assessment for autism.
Then 10 days ago he had an appointment alone and I sat with him, the clinician asked if he wanted me to stay and he said yes - then he went into all these tests. It was then I realised what they were doing and this was confirmed to me a week later. It was never discussed with me that there was a possibility of DS having autism or him having tests done so it came as a bit of a shock sitting there seeing my son trying his best.

Flyboy152

julie03 wrote: »

having a "label" doesn't mean the word is stuck to his forehead for the world to see. it is totally up to you and him who you tell.

having an official diagnosis opens up a lot more doors for you and him, educationally especially, he will get more help and uni do loads of help for autism, the support group i go to two of the mums have children in uni and they are both doing well, socially its hard but it always will be.
As for the jobs situation, if he is awkward in interviews at least a diagnosis would explain it and any future employers would look more at his qualifications.

i wouldnt hesitate in getting a diagnosis, i think my son is doing better for his.

Indeed, it is essential for the local Children's Services etc. to be able to allocate resources to help him. He will need these diagnoses to establish his primary need and if he needs a statement for extra help at school, it will impossible without one. The diagnoses are the keys to the doors that stop him from getting what he needs.

Bumpmakesfour

We just got knocked back by CAHMS as apparently DS needs to be more of a danger to others or himself.So his wetting,soiling,no sleeping,no eating,tapping,whistling,head banging,running away,hiding under tables,biting lips till they bleed etc etc blah blah de blah aren't enough apparently.Hmmmm.

munchings-n-crunchings

With any diagnosis, it's up to the young person as to what is disclosed.
There are points in life, when a label can be useful, as they help explain, and give understanding. It's important that your son understands, that regardless of any label, it's still him underneath, and nothing changes that.
The diagnosis is not necessarily for life, as there is always the option of requesting a misdiagnosis to change that.

My daughter, now 15, hope to go to university. She was advised aged 10, to start one to one coaching in maths, in the hope that she could get at least some sort of grade, but the teacher felt that on leaving school, as long as she could check she had the correct change from a shop, that would be a good result. No! She wants more than that.
Currently, she is working at a grade B, so has proved everyone wrong. I have got her a tutor, but only for the last 6 months.

Don't worry about the school report. I think tribunals are fairly used to them being pulled apart. If you are within time appeal, or if not, claim again knowing what to expect, and be prepared to take it to tribunal.

My daughter went to CAHMS, and we found their help really useful, especially in coping strategies for stress and anxiety, and sleep disorder.
The one piece of advice I would give you, is to engage in conversation with your son, the more he understands about himself, the better he will cope with life. As a parent, read up about autism / Asperger's syndrome, you will be key in supporting your son.
Luke Jackson's book, Freaks, Geeks and Asperger's will be a good place to start.

My daughter understands, that ASD is part of who she is, and without it, she just would not be the same. That attitude will get her far.

Regards
Munchie

Bumpmakesfour

How did you all access CAHMS if you don't mind me asking??

Flyboy152

Isn't CAMHS self-referral nowadays?