TRIGGER WARNING: This is not an easy post to write or a gentle one to read so if you are experiencing or have experienced distressing situations with school and its effects on the mental health of you or your child you may find it’s content upsetting.
I have been in reflective mood this week due to all the activity on TV and social media regarding the fight to get Pathological Demand Avoidance officially recognised in all areas. I have been thinking a lot about our past struggles that came as a direct result of it not being acknowledged by professionals in our LA.
I am all about the positive so I do not usually dwell on the more negative parts of our journey but we (my son and I) have had some really tough times too. I know that it is highly likely many of you reading this may be going through hard times yourselves as latest figures according to the PDA Society show 70% of PDA children as having been failed by the current education system which is horrific and why I feel I have to speak out.
When I had to ‘decide’ to give up on school for my child it was not what I wanted, not what my son had (up to that point) wanted, although ultimately it was his final decision, in truth I felt like it was not a choice at all for either of us. I wrote the following email on the 20th June 2016 I and sent it to the ADOS assessment team, the school, the 0 -25 SEND team and my MP. It was a last ditch attempt to get help, at that point I did not think my son would take to me teaching him and so I wasn’t threatening to de-register him, just to stop trying to force him into school.
(The following is the original email minus names of people and services).
”To all it may concern,
Tonight I have taken the very difficult decision to take my son out of school. After battling for the last 5 years to get him the help and support he needs and failing I can only conclude that this policy of inclusion is in reality just a cover for removing any help and support for those who do not ‘fit’ into the average mold for reasons of finance.
My son is bright, ambitious and has a thirst for knowledge and a desire not only to attend school but to eventually attend university yet he finds school an unbearable, anxiety inducing place to be.
The fight I have had over the last 4 years to try and get him ‘labelled’ just so that people can accept him as he is and not treat him as just one of a crowd has almost broken me. To find that he ticks 90% of the boxes when tested for autism but still can not be diagnosed due to the fact he has not been witnessed across settings ‘as exhibiting as autistic’ by anyone but me is frustrating in the extreme as I am the only one who involved who sees him across settings! No one has ever even visited my home so how could he be seen across settings?
Apparently the fact that I worked on and off with autistic adults and children for twenty years in both home and school environments and have an autistic brother I was brought up with does not qualify me to recognise autistic behaviour or I am not believed. Anyway as a result his case remains open and without formal clarification as to whether or not he does it doesn’t have autism or anything else for that matter.
I have given up almost aspects of my previous life to care for my son, I stick to rigid routines, I do not go out in the evenings, I gave up my job and now struggle to work even part time as self employed, my relationship failed in large part due to the stress of it all. On top of all this I get punched and kicked on a regular basis due to the pressures of school and other frustrations by my son but that’s ok apparently because it is only happening to me and no one else.
I watched my son have panic attacks and at times attempt self harm from an early age. I am told I am a faultless parent, that he is well adjusted and does not have mental health issues and he is offered speech therapy, for a child who now has a better vocabulary than most adults? Otherwise we don’t qualify for any help, I don’t need any support as I am ‘too good a parent’. My son is no more than ‘an interesting case’ to professionals it seems.
So you see the only course I can see open to me is to make us into a problem family by not sending my son to school and perhaps going to prison for that which may be the closest thing to respite care I get. I can completely understand why parents are sometimes driven to suicide in these situations, although some thing I could never do as I am my sons only ally. I feel like no one cares and it is all a spending minimising exercise for government bodies.
I have done all I can, my son is on his 3rd school and not even 10 yet and the current school is the best mainstream can get for a child without diagnoses but he can’t cope and I owe it to my child to say enough is enough before he self harms or hits out at others or runs away which are all things he has considered.
In short the system has let us down so we are opting out even though we both deeply desire it to work for us.
My son is one of the most lovely caring, sensitive individuals I have ever had the pleasure to know and is mortified when he can’t control aggression and I wouldn’t give him up or change him for the world. All I wish was that there was a system that could look beyond budgets, targets and tests and allow him to be in an environment where he could thrive and allow me a little of my own life back so we could both be useful, happy and productive members of society.”
I discovered PDA within hours of sending this email (in a night of tears and desperation hammering my keyboard looking for help and answers) on the National Autistic Society’s website connected to a page on school refusal. I forwarded the diagnostic criteria to the ADOS team in a separate email which was what led to final diagnoses of ASD (Autism spectrum disorder) a month later, although PDA was never put in writing and I was advised never to mention it. At the time of writing this email I had already been threatened with fines, prison and even foster care, I had been flagging up my sons anxiety and possible autism since he was 2 and he had been initially referred by my GP for diagnoses when he was 5.
Many promises were made after diagnoses and I had high hopes things would improve, but instead we limped on for 7 months after this before having to leave the system anyway. An EHCP assessment was applied for and declined, the interventions I asked for within school were promised and then withdrawn before they started and replaced with totally unsuitable damaging provision, my son only managed to attend anything for a couple of hours a week at best so I had to give up work completely and finally got so anxious he was unable to function even at home, and we had to leave the education system. I was then accused of medicalising my son (despite him having an ASD diagnoses) and reported to social services, the case was swiftly dismissed. An EHCP and a specialist school place was offered a month after the social workers visit but the provision was unsuitable and his anxieties too high to attend.
These days my son and I love home education and I am so glad we are where we are now but everything about the path we were forced along to get here was wrong and ultimately he is a still a child who wished to attend school and was unable to because the school system did not and could not meet his needs. This needs to change.
Graphic ‘Demand avoidant profile of ASD’ used with kind permission of the PDA Society.