Hi..
I'm new here and this is my first post.
I really need some advice on what / where to go next.
I have 3 children, eldest daughter is 14, my son 10, and younger daughter 6.
My son, from the age of 5 I have begged the school for help as I knew something wasnt 'quite right' with him. I thought at that time he had a learning disability but the school told me that "boys are more lazy than girls" and to stop comparing him to my eldest daughter.
I went to the GP who prescribed Phenegen as my son was also not sleeping, and he was having to have me with him in my bed to settle. He was quite happy to be on his own during 'play' and made 2 other friends in pre-school and nursery, who are his friends to now (both also suspected ASD).
My son's behaviour was becoming more extreme at home, where he was physically aggressive and violent towards me, on one occassion I also found a kitchen knife under his bed. I went back to the GP and he agreed that my son's behaviours and quirks would warrant a referral to CAMHS.
We entered CAMHS in 2014, we went through the history from birth to present. CAMHS agreed that my son would need an assessment for ASD and ADHD.
I completed the 3di with CAMHS. From the results of the 3di they stated that my son had ASD (Aspergers). The Dr wanted my son to have an ADOS, which went ahead, from the results they stated that my son did not meet the criteria of ASD from the ADOS, however he had many traits and CAMHS wanted him to be referred to the SALT and OT for futher assessments.
SALT has given me a 14 page detailed report, some of the highlights are:
- He enjoys interacting with adults.
- His short term auditory memory skills were shown to be delayed
- Pragmatic language difficulties
- difficulties his understanding of other people's perceptions
- inflexible viewpoints
- problems regulating his emotions
- difficulties identifying emotions expressed by others
- he required considerable adult support to remain focused on task
- he showed impatience and limited attention skills within assessment
- He used the memory strategy of repeating what had been asked while processing the information to help him succeed.
- He appeared to tell the time using analogue clock.
- He does not always understand verbal humour functionally
- When he could not think of a word he hit his head showing visible frustration
- He was able to use mature vocabulary
- He did not always listen to the therapist when it was her turn to talk, interrupted her inappropriately and spoke over her
- His teacher stated it can be necessary to stop him mid-flow to ask for clarification
- He has difficulty expressing his emotions and presents with poor self regulation
- his speech was fluent though fast in utterance, especially when motivated by the conversational topic.
- His use of intonation and volume to add stress appeared unusual
- He has a small circle of friends in school
- He was observed to give his peers instructions of what to do within a simple role play activity
- It is not clear whether he is able to take direction from peers at school
- His understanding of friendship is developing but appeared a little immature
- He was noted to hold his ears and walk away when a peer became upset and cried out loudly next to him
- He was observed to show limited empathy towards a peer he had just stated was his best friend
- His teacher stated he will tell her when others are talking and not working when they shouldnt be
- He failed the Baron-Cohen Sally Ann test showing significant difficulties with Theory of Mind
- He is not aware how others will interpret and respond to what he says
- He is good at picking out detail within pictures presented but does not always identify more obvious and salient elements
- He gave some fantastical ideas as solutions to problems.
- He does interpret things literally
- His teacher has noticed his interests in dinosaurs as he will bring this into his literacy work
He doesnt like change to routine, he has a very black or white view of the world.
depite the reports from SALT and OT, CAMHS are reluctant to give him a diagnosis based on the results of the ADOS. I'm so frustrated with the whole process now. I feel that we're no further forward.
Do I continue with the current CAMHS we have or do I go back to the GP to request a second opionion from 'out of area'?
I am having awful difficulties with the school to get my son some support, school state they are meeting his needs within the SEN budget - however, OT recommended stationary and air cushion - these I am still waiting to be purchased in, so I have provided them from my own money and sent them into school. School, as they do not see a disruptive child they are just stating he is "fine", however, the SALT stated to me, "its not the ones that are disruptive that worry me, its those who quietly internalise it all". My son struggles with the transistion from school, where he'll explode the second he leaves the school door.
I feel exhausted and as though no-one is really listening.
