My son had difficulties that were blindingly obvious from a very early age and first flagged up at pre-school. He ticks every box apart from the “eye contact” and “ability to empathise” areas and this, along with our god-awful mistake of raising him to be polite, friendly, well mannered and behaved, has stood in the way of him getting a break his entire life.
One of my closest friends is a clinical psychologist and suspected AS when he was still very young. She couldn’t assess / diagnosis him formally but did carry out “off the record” assessments to see what the results were. She advised me to push for assessments with Educational Psychology and Clinical Psychology etc which were first completed in 2007 but never followed up because “He’s a nice boy really and I think we just need to help him to find coping strategies”
It wasn’t until I personally requested a referral to CAMHS that any further referrals were made. I asked for their input because his mental health bombed and he started pulling out his eyelashes, eyebrows and hair having become totally isolated and without any friends whatsoever.
To make matters worse he was due to transfer to secondary in 2011. His teacher supported my request to have him attend a smaller secondary where he would be less overwhelmed and more supported and helped me prepare for a panel hearing.
To try and speed things up and get the help he needed, the head teacher referred to the Consultant Paediatrician. CAMHS said they thought he might need counselling / confidence building sessions but would need to await the outcome of the Consultant Paed’s assessments.
The OT’s went ballistic when they learned he was first assessed by EP four years earlier but never followed up because there was nothing they could do other than offer advice and suggestions. He scored just below the 2nd percentile on his physical assessments, indicating significant difficulties that unfortunately, can’t now be put right.
The paediatrician was too taken with how polite and friendly my son was to listen to anything I said and couldn’t understand my concerns about the allocated school having over 1600 pupils with routines and schedules that would leave him spinning. Without a formal diagnosis to add weight to his cause and having been subjected to the most farcical hearing imaginable with utterly clueless panel members (“Why doesn’t he take medication? Can’t be that bad if he can manage without”), the appeal was not allowed and my son has been home-schooled ever since.
My options were either risk his mental health and emotional wellbeing by letting him attend a school I know full well would crucify him from the outset - or risk his general development and potentially leave him dependent on care support as an adult. Nice set of options.
He has been unfairly cheated out of any / all support he deserves because he’s a “nice” boy who likes giving people hugs and quite literally wouldn’t harm a fly. He’s missed out on a whole year’s education and emotional development by the tribunal hearing panel and I remain bitterly resentful that he has been denied so many opportunities.
I’ve applied for another appeal hearing for September this year although I’m already bracing myself for the letter that says they’re going to do nothing for him.
It’s soul-destroying beyond belief and I’ve no fight left in me. All I want is for him to go to school and be happy.
God, I’m fed up. 
