How the Mental Health Services and Education System are Killing Our Children

I attended a vigil for a local 19-year-old autistic lad who had commit suicide due to lack of support or help from the mental health services. His mother had fought for years to get him the support and help he needed, but her pleas had fallen on deaf ears. He had tried to commit suicide the week before but the mental health services refused to section him in a psychiatric facility, even though he was clearly suicidal. Heart breaking at it was; seeing his family and friends mourning the loss that should never have happened, the fact that this is not, by far, an isolated incident where an autistic child or young adult has felt that they had no other option but to take their own life because they were denied the help and support that they desperately needed.

Within the autistic community, I hear regularly of autistic children and young adults who have taken their own lives, after both they and their families have fought and fought to get services such as CAHMS or EUMES to listen to them and take their needs seriously.

Too often I hear how services (as well as Local Education Authorities, schools and other professionals) blame parents for their child’s needs or deny that the child has the needs that their parents are crying out for support with. Parents must be exaggerating. It must be Munchausen by Proxy. The child appears perfectly fine at school (masking) so it must be a home problem.

Too often autistics do not receive the support from the mental health services that they need in order to cope in this Neurotypical world. The services are badly underfunded, have little to no training or understanding in autistics and PDA (Pathological Demand Avoidance) individuals and it is believed (by many in the community) that they act under the process of ‘if you acknowledge a need, you have to support it’ so they do everything they can to avoid acknowledging the issue in order to save putting their hand in the tiny pot of money that they have available for all patients.

The understanding of autistics seems to be stuck in the 1980’s, paired with a belief that depression, anxiety and other mental health issues are part and parcel of being autistic and, as autism can’t be cured; there isn’t much point in trying to treat the mental health issues. Why waste what little money they have on a lost cause when there are plenty of Neurotypicals that they can help?

We experience depression and mental health issues the same as Neurotypicals do. The difference is in the way in which we need to be supported and treated for it. We do not respond to the same treatment that is offered to Neurotypicals (generally) such as Cognitive Behavioural Therapy, and there are no other treatments that are designed for autistics available. No effort, funding or training has gone into learning how to support and treat mental health issues in autistic or PDA individuals.

CAMHS and EUMES (as well as most professional bodies) either don’t believe that PDA exists as a profile at all or believe that it is simply a trauma response. They are either badly behaved or damaged children. Zero understanding or training has been attempted to understand an entire group of individuals and how to help support them when they have mental health difficulties.

During the Covid-19 epidemic, the services for autistic and PDA individuals has got even worse. I have friends whose children are under CAMHS and have been waiting for urgent appointments for 4 months now after a booked appointment was cancelled. They can’t even get the service to answer their phones or return their calls.

Children and families in desperate need of support have been abandoned in their hour of need as, although a sizeable number of autistics are thriving within lockdown, there is a significant number that aren’t. But help is not available.

Unfortunately, the education system is not a lot better. Staff are seriously lacking in understanding, receive the most basic of autism training (which I have been on myself and not only was it totally inaccurate in it’s description of autistics and autistic characteristics, the techniques and practices it taught would not be beneficial to all, if any, autistics or PDA individuals), they are not supported efficiently by Local Education Authorities, have far more children enrolled than the school should have, and they do not have the time or resources in order to support autistic or PDA children effectively. There appears to be practically no understanding, whatsoever, that autistic and PDA children’s needs differ wildly and that techniques and strategies that would work with autistic children, will have an opposite effect on PDA children.

PDA children, especially, are failed by schools due to the lack of understanding, as they tend to be expert maskers; hiding the trauma that they are experiencing until they return to the safety of their home, when the overwhelm and stress that they have been holding in all day explodes out of them.If they don’t mask, they are treated as children with behavioural issues and are either excluded, punished or the staff try to enforce more demands on the child to behave; which just causes more stress, anxiety and panic in the child.It becomes a vicious circle which can only ever result in the child being traumatised and unable to cope with being in school at all.

There are a number of specialist schools (I have recently learned that there are a lot more specialist schools planned to open soon) but they are so over subscribed that, at my local autistic school last September, there were over 600 children fighting over 2 spaces. What do you think happens to the 598 children that don’t secure a space? They end up in a mainstream classroom of 30+ children that they can’t cope with, the teacher doesn’t have the training, time, or understanding in order to support them, they often don’t have EHCPs (as they are extremely difficult to get as well as taking a ridiculously long time to obtain) often cannot cope with the sensory overwhelm of being in a packed classroom, and are usually bullied by their peers for being different. A high percentage of these children end up being removed or excluded from school and end up being home schooled, suffering from impaired mental health and trauma from their experience of being in a mainstream environment.

80% of PDA children are home schooled.

All of these children are being denied their legal right to an education, simply because the schools lack the funding, understanding, spaces, and training to be able to support them enough for them to cope.

While these children are forced to stay in school, they often experience severe trauma and end up leaving school with significant mental health issues, as well as chronically low self-esteem, and then aren’t supported by the mental health services. Their parents threatened with fines or legal action if they don’t either force their child into school or to off-roll them; freeing the Local Authority of any responsibility of care or education.

It’s easy to understand why these children often feel that they have no other option but to commit suicide. They want to learn. They want to fit in. They want to be supported and accepted. They want to be able to cope and thrive in this world. But the schools and services almost seem to be doing everything they can to break them.

I’m not the only one who can see this; who wants to make a stand and a change so that our children stop dying needlessly.

There is a fantastic petition and Facebook group called National Curriculum Crisis ( https://www.facebook.com/groups/CurriculumCrisisUK/ ) that is fighting for the National Curriculum to be changed to a much more nurturing environment, where all children are taught and encouraged using their strengths and skills. If you can, please head over there, join the group; fill out the survey that is relevant to you (parent, teacher, child) and sign the petition.

There is also a movement run by Melanie Leahy who lost her child because he was badly failed by the mental health system, and she is fighting for a change in the services. Her group is Justice for Matthew Leahy ( https://www.facebook.com/groups/470129540220825/ )

The time for inaction has passed. Sitting back and complaining about the system and not doing anything about it is no longer an option.

We shy away from kicking up a fuss because they are meant to be taking care of our children. We trust them to do this because; they’re the professionals, aren’t they? We don’t want to upset them because they can withhold support and help. Well, our children already aren’t getting that support and help. Our children aren’t being cared for; they are being cast aside because they are different and seen as ‘less than’ by the general population. Well, fuck that.

We forget how much power we, the community, wield. How strong we are when we stand side by side and fight for our children together.

It is believed that 1.1% of the population are diagnosed autistic (and we know for a fact that that figure can be doubled, if not more, to include the autistics that aren’t diagnosed). So, in the UK alone, that makes 733,150 diagnosed autistics that are (or have been) potentially being let down by either the mental health or education systems; often both. Let that sink in for a moment. 1.5 million autistics on our little island alone.

Now think what that figure might look like globally.

Still feel powerless and alone in this fight?

Funding needs to be dramatically increased. Far better training needs to be provided to all professionals who work with autistics; training run by autistics and PDA individuals, in my opinion. We have first person experience of what autistic and PDA children are going through; how they experience the world. We understand the motivations and reasons behind behaviour and we know how best to support them. I’m not saying that there is no value in Neurotypical run training, but from my experience, it is outdated and largely does not explain or understand the core of autistics and PDA individuals.

A change NEEDS to happen. At a Governmental level. So, let’s fight together to make that change happen, before another one of our children pays the price of our inaction with their life.