My son has ASD and wasn’t diagnosed until age 11. I was clueless about ASD until then and with no close family support I relied on the views of professionals when problems with behaviour in school arose during primary education. In hindsight I was subjected to parent blaming and even though I took up all offers of courses in parenting (attending the same course twice at times), without a diagnosis and suitable in-class support, my son’s problems only increased over time. I can’t help wondering whether my status as a lone-parent informed the school’s insistence that my son’s problems were caused by my failure as a parent, rather than accept that he may have an undiagnosed developmental condition.
I gradually managed to educate myself in neurodiversity and in one meeting with three or four members of school staff about his class ‘behaviour’ (he would hide under desks during lesson time), I tentatively suggested my son might be autistic. His class teacher guffawed. I was outnumbered and felt beaten. Shortly after this, in year 5, I moved my son to another school and thankfully their response was immediate. He was given one-to-one support with an LSA, an EHCP application was made and a second CAMHS referral made (my previous referral had led to a short meeting with a practitioner who failed to pick up my son’s ASD).
The new school did a great deal to try and help my son but as a mainstream school, they were unable to offer the specialist support that he needed. We were late most mornings because his anxiety about attending school started from me trying to get him out of bed in the morning, to getting him out of the house and into the car and then coaxing him out of the car when we arrived at school.
We faced a battle between the school and our local authority. His draft EHCP clearly stated that he needed a specialist school, but his final EHCP came through with 25 hours support in a mainstream setting. I negotiated this up to 30 hours because I knew he would need support at break and lunchtimes if he was to have any chance of surviving in a mainstream secondary school setting.
When this was granted, I felt this could work ok for him. Naively I thought this meant he would get 30 hours one-to-one support. I was wrong. He started in his new setting with no support at all. Eventually there was a few hours shared support, but he was already becoming the subject of bullying and one day came home with ripped trousers – he said the whole of his class had been chasing after him.
After eight weeks he was being given increasingly severe detentions for his ‘flight’ behaviour (where he would leave a class when overwhelmed). He could not cope with detentions which initially were at break time, then lunchtime and finally were after school. His break and lunchtimes were important for him to regulate so he could manage his lessons. He was being treated like any other child rather than as a child with special needs that required reasonable adjustments in order to be able to access his education. I was forced to keep him at home and again faced a battle between the school and the local authority.
It was then 17 months until he started a special school placement. This was too long (COVID was in the middle of this time making the process even slower than normal). The school was an hour away on the provided transport (30 minutes by car so I took him in every morning). My son couldn’t cope with the journey and after five months of increasingly reduced school hours, he hit burnout. We were then finally offered an independent school which was much nearer, but he was so traumatised by his school experiences that he couldn’t manage the taster session that was arranged for him. I didn’t know it at the time, but that was the end of his formal education, in year 9 with a total of only seven months of secondary education attendance.
The fight continued for me. I tried to get him some alternative provision with an organisation called Dare2Dream but the local authority kept asserting that his current special school placement was suitable and he just needed to attend. I received a very condescending email from his local authority caseworker saying I should encourage him to attend school (as if I hadn’t spent many hours doing that through most of his primary education and nearly had a breakdown myself trying to get him to attend his current placement!). After speaking to social service’s ‘Early Help’, I had referred myself to the Legal Intervention Team (LIT) as a last resort. This in itself was traumatic. I had always been worried that my son’s school non-attendance could result in fines and even prison for me as a parent. The LIT team were very supportive but the local authority wanted to revisit failed options, particularly online learning, which my son had previously refused to engage in, rather than the more costly Dare2Dream provision which I felt would be the best way to encourage him to re-engage.
I was exhausted. My son had become totally isolated, not even wanting to leave the house to go to McDonald’s, so for his final school year I opted to electively home educate (EHE). It gave me the space to recover from the onslaught of bureaucracy and took away the spectre of me ending up in prison. After a while I found I was able to check my emails without feeling anxious. I hadn’t realised what an effect the fight for a suitable education for my son had had on me. Now I wasn’t constantly fielding emails from a school and the local authority, I was able to focus more on my son and his needs. Gradually we both started to heal.
Ironically, now in his post-16 years I have been able to request Dare2Dream as a placement and he has been granted sessions since February. He is yet to engage with them, but I am hopeful that there may be a breakthrough soon. I have felt consistently that the right provision has always been granted too late. If he’d had Dare2Dream years, or even months, earlier the outcome would have been more positive.
This summary of the trauma that both my son and I have experienced has focused on school however this has also been compounded by failures of support by CAMHS. My son had five separate referrals over many years before finally being assigned a psychiatrist. These sessions have always been on videocall and my son has refused to appear on camera, so the psychiatrist has never actually met my son.
What has the short and long term impact been on your family?
Short term I experienced daily stress trying to get my son to attend school, then a feeling of panic when collecting him from school in case there was yet another request for me to ‘come in and chat to his teacher’ because of problems that day. For him daily life was miserable, being forced into an environment that was not right for him. Long term my son has been unable to engage in education, even though he is very bright and capable. He has not had any friends for at least five years. He suffered suicidal ideation when attending schools, starting when he was only aged 8.
The pleasure associated with family has at times been wiped out by having this cloud of school issues hanging over us. I only realised the effect all this had had on me when, a while after I started home-schooling, I realised I was no longer feeling a sense of panic when I opened my email inbox. I was so used to having to deal with emails regarding his behaviour in school and my fight for a suitable educational placement for him, it had become normal to feel trepidation when I logged in.
What do you wish had been done differently to support you?
Earlier diagnosis – primary staff need to be educated in neurodiversity and quick action needs to be taken to attain a diagnosis at a young age. Parenting courses should not be used as a way to ‘cure’ neurodiversity, or at very least should include information about neurodiversity so that parents can assess for themselves whether a diagnosis may be needed for their child.
Why do you feel that a report on Systems Generated Trauma is so important?
Because currently money is being spent in the wrong places. If we can avoid trauma by improving systems so youngster get earlier diagnosis, I truly believe money will be saved, through youngsters flourishing by having their needs met. Long term councils will save money on tribunals and costly alternative provision when a child becomes too traumatised to attend school and even longer term, if we get education right for neurodivergent youngsters then in time our prisons and addiction centres may well start to empty.
If you could give one piece of advice to public service leaders, what would it be?
Change schools, make them happier places. Ensure children are diagnosed at the earliest possible time then stop all this focus on academic results. Wellbeing should come before maths and English lessons. So, whether that means more singing, more outdoor education, more drama or more practical skills training, or all of the above, stop focusing on our place in the league table for reading, writing and arithmetic and celebrate reducing numbers of SEN parents forced to home school their children because they have run out of options and no longer want to fear the possibility of prison time.
