Published on 12, July, 2020
I don't know if anyone can give me some advice or guidance. I'm really hoping so.
I have a 12 year old son. He suffers with anxiety and panic disorder, and during recent cognitive behaviour therapy through CAMHs, his therapist told me he showed several traits of Autism. This was not a surprise, as this is something I have always suspected. My sons primary school never really pushed or addressed the Autism as he is very bright and always scored very highly on assessments, etc. I also never really pressed the issue as he always seemed to just get along (even with difficulties). However, once my son reached year 5 and the transition to secondary school, everything crashed and became so clear and obvious. He found it very traumatic. The change, having to learn new faces, a new setting, new routines. It was all so overwhelming for him. My son very much masks and always wants to 'fit in'. This is what I am sure his school teachers see, alongside the anxiety. However, what the school do not see is the flip side, when he comes home so overwhelmed and exhausted. The holidays and breaks in the routine cause a lot of upset and anguish. Trips take so much planning before hand and preparation for my son. We need to talk through what he will expect, show photos, websites, etc. He puts plans in place in his head, to stop himself stimming in class or allowing his thoughts to wander. He finds assessments stressful. Not because he doesn't have the knowledge but the clock ticking adds pressure and he finds it hard to then focus.
My GP recently referred my son to community paediatrics for an ASD referral, alongside the school questionnaire. I have heard today that the referral has been rejected due to them believing his only issues are social and emotional. I don't blame the school as he is only Year 7 and hasn't been there that long, and due to my son masking, they can only say what they see. Which is primarily the anxiety, not the root cause. I have been advised to go through the whole process again, with a letter from CAMHs, a new GP referral and a new questionnaire from school. This is exhausting! And, though I will most definitely go through the whole process again, I have a young son who is desperately looking for answers as to why he feels different and thinks differently, which is heart-breaking.
Has anyone else had this happen to them and is there any advice you can give me? I'm considering going private but I wouldn't even know where to start! There's so many websites online, but which ones are legit? Most of them all speak about school input, but his school really only focus on the anxiety my son suffers, not the actual root cause.
I feel like we are stuck... Please help?
Mark (formerly Spikey) said:(Hmm - why do I have this stupid unchangeable username when other have nice ones?)
Click on the little circle in the top right of the screen to the far right of the COLOUR MODE grey box, click on PROFILE in the drop down list - then when this page loads there is an EDIT PROFILE oblong box on the right of the screen - click on this.
When this opens then at the top of the page is a section called YOU ARE HERE with your user name in it - click on this and edit it (it will tell you if it already in use).
Remember to click on the SAVE PROFILE obling on the right of the screen.
Ask you GP to reboot that, put with it a list of all the common major (so the untrained idiot check boxes) autism traits, literally in a bullet point (ie inability to interpret non verbal language, irritability, aggression, sensory hypersensitivity), just put all in the list. When they call, have an example or two for each symptom, most ending in a meltdown/shutdown (I am assuming you have these to some level) but don't brush it off as tantrums or expected behaviour, and dont agree it could be seen like that.
In a nutshell, do what it takes, say what they want to hear, to get to the specialist. When you get one, they will start all from scratch and work with your son and you to document everything and pave the way to an assessment.
Dont worry, and keep knocking the door.
(Hmm - why do I have this stupid unchangeable username when other have nice ones?)
If I may interject with a conspiracy theory. A relative of mine was obviously dyslexic, but the school refused to have him tested. Eventually their parents got a private test which showed that he was dyslexic.
The suspicion is of the Donald Trump mentality of "if we don't test for Covid, then the cases will go down". It would cost the school to give the child special help, so it was in their interest not to have it on record.
The private assessment has solved all this (though not for the school's or parent's finances - ha ha)
If you can afford a private assessment then it might be the best way. The devious part of me wants to say that you tell them you will get it done privately and will then sue them for reimbursement, if positive. I'm not a lawyer so it it probably best to ignore my devious ideas - ha ha.
I do not have direct experience of this - however, I wondered if you might find some guidance in
Clinical guideline [CG128]Published: 28 September 2011 Last updated: 20 December 2017!
- which is available here: https://www.nice.org.uk/guidance/CG128
I noticed that in the section:
"1.6 After the autism diagnostic assessment"
there is mention of (following disagreement in the Autism Team, the possibility of
"referral to a specialised tertiary autism team if necessary"
...maybe your GP could investigate / advise if such a tertiary autism team exists in your area?
Was about to say the exact same thing, the two biggest struggles I have being autistic that happen to be the two fundamental parts of being alive are social and emotional.
Can't imagine anyone would put anything else in their top 2 autistic issues.
Venus&Mars1713 said:rejected due to them believing his only issues are social and emotiona
autism is a social issue though lol so i dont get their logic on that.