Why I Took To The Stage To Talk About Autism, Mental Health And Service Provision
I would not describe myself as an extrovert, but this year I have found a strength I didn’t know I had. The strength to stand up in public and talk about subjects I am passionate about: autism, mental health and service provision. It’s no secret that I have both a professional and personal connection to the above, and it’s becoming less and less of a secret that I have strong views I want to share to bring about change. Friends and colleagues are surprised I’m putting myself out there so publicly, and it’s hard. But I think it’s necessary, and that’s why I do it.
I cannot go home after a long day at work and forget the stories I hear, the suffering I see. I go home to the same situations. Sometimes I meet a family that reminds me of my own. I see the same obstacles blocking their journey, and I drive home hoping they won’t be forced down the same roads that we were, hoping they’ll get the help they need now in order to avoid future mental health difficulties developing. To avoid social confusion, social isolation, bullying. I met a young girl recently who has been bullied since nursery school. She is now 17. It has scarred her life and what was once for her a world full of hope and possibilities is now frightening terrain, filled with dread and uncertainty.
There’s still a long way to go in understanding and supporting autism
Despite the stories in the press like the ones below, there is still a long way to go in educating, reducing stigma and unhelpful stereotypical beliefs, and promoting understanding, inclusion and support.
Child Mental Health Crisis “Worse than suspected” (Guardian, 2016)
Children Who Believe They are Transgender “Could Have Autism,” Says Controversial Expert (Telegraph, January, 2017) :
Autism is a spectrum, different in everyone it affects
Autism is a neurological development condition and it cannot be fitted neatly into a box. It cuts across different domains, e.g. cognition, sensory, emotional, psychological, language and communication, play, etc. There is a set of diagnostic criteria, and there are core symptoms, but these do not manifest in exactly the same way in each person. Everyone is a unique human being and symptoms can vary in their presentation and severity. It is a spectrum. This might sound obvious, you might think, “Yes, yes, tell us something we don’t know,” but I often come across situations where this is not common knowledge. The stereotypical view of what autism is persists in many communities and, as a result, the needs of children and young people are missed and they do not receive appropriate support.
An invisible disability
Difficulties increase as children get older, as do unhelpful labels, and both can contribute to mental health difficulties and risk of suicide. We all expect everyone in the medical professional and in education to know is that ASC (autism spectrum condition) is an invisible disability, but this isn’t as widely known as you might expect. In my experience as a parent, many professionals in the mental health services are ignorant of this fact, and it is convenient for commissioners, which makes me want to have a meltdown.
Comorbid mental health conditions
Many of these children and young people are incredibly complex and have comorbid mental health conditions (conditions that exist alongside autism), e.g. depression, generalised anxiety disorder, OCD, etc. I heard Dr Simonoff (Professor of Child and Adolescent Psychiatry at Kings/Maudsley) talk about autism and diagnosis recently, and she said that most of the children and young people they see have at least 2 comorbid mental health conditions, the most common being:
- Anxiety, in particular social anxiety. At a study day I went to at City University, London, on Autism and Anxiety, it was suggested that most, if not all, people on the spectrum suffer from anxiety. The National Autistic Society (2011) found that 40% of the population with autism had at least one anxiety disorder compared to 15% of the general population.
- Attention Deficit Hyperactive Disorder. Many of the children and young people I see have this.
- Oppositional behaviour. I am becoming increasingly interested in this and the possible underlying causes. The Pathological Demand Avoidance (PDA) society states, “The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.” I am interested in the link between anxiety and oppositional behaviour and whether there is always a link.
- Tony Attwood (2003) reported a high rate of mood disorders in people with Aspergers.
Help for mental health and autism is a postcode lottery
We are becoming better at recognising mental health difficulties in children and young people, and research shows a high rate of comorbidity of mental health disorders and autism. So why is it still a postcode lottery as to what support and intervention you will get? I was recently in a school and couldn’t help but notice a child not known to me in the playground. He was clearly struggling, and the school are finding it very hard to manage and support him. They told me he was known to CAMHS (children and adolescent mental health services) and he was on the waiting list for autism assessment. However, the Educational Psychologist had told the family that if he gets an ASC diagnosis CAMHS won’t see him. So, despite what research is telling us, this family now have to choose whether to get help for the mental health difficulties or for autism. Perhaps I am missing something but that does not make any sense whatsoever to me, and if he is on the spectrum they will have to adapt what they are doing with him or it won’t work.
The need to treat the whole person
The point is, you can’t separate these conditions, you have to consider the underlying autism and the impact this has. The National Autistic Society (2010) reported that one in ten children who are on the CAMHS caseload have ASC. I know a CAMHS practitioner who said her entire caseload is on the spectrum. We have to treat the person, the whole person, or we won’t be giving meaningful help. There are also financial implications here. Why fund treatments that research has found don’t work? Research tells us that CBT won’t work with the autism population unless it is modified and it goes without saying that the practitioner must have considerable knowledge and experience of working with children and young people with autism.
Undiagnosed conditions can lead to misunderstanding, self-harming and suicidal thoughts
I work with a boy who is very bright and who copies language and behaviour to try to fit in and make friends. He is so good at copying that it masks many underlying difficulties and a complete lack of understanding of friendship and other minds. It is hard to marry the things he says and the way he conducts himself in a structured situation, such as the classroom, with the “anger” that spills out on to the playground on a daily basis. Dig a little deeper and you see that he is lost, he has very little understanding of the reciprocal nature of relationships, very little understanding of others’ thoughts, feeling and behaviour. He interprets what he sees through his own lens, so it is always biased, rarely accurate, and can lead to very difficult situations that he cannot think around, reflect on or problem solve. He does not want to come to school anymore. He has become depressed and suicidal. He has self-harmed since he was a young boy. Self-harm is often portrayed as cutting, and families do not always realise how wide this area is and that they often witness self-harm without knowing this is what they are seeing.
A mismatch between research results and service provision
There is a depressing mismatch between what we are learning through research and what can be provided. Schools and many NHS services are facing cuts that greatly reduce what they can do. One of the greatest casualties is multi-disciplinary team working. As I said in the beginning of this post, autism cuts across different domains and different professions, and one professional viewpoint is often not sufficient to provide truly effective support. I meet many young people whose difficulties are misunderstood and, as a result, miss out on referrals which could be life changing, and on support which could help them:
- reach their potential in the school setting
- have positive experiences and realise their strengths
- understand themselves and others
- develop and maintain friendships and relationships
Without this knowledge life can be harder to navigate and make sense of, which can contribute to mental health difficulties.
What I hope to achieve
For all these reasons, and more, I have started to talk at events, conferences, meetings, anywhere and everywhere. What do I hope to achieve? I hope to raise awareness of the spectrum, of the possible impact of an invisible disability, of the cost of missing it or misdiagnosing it, and the cost of not acknowledging the prevalence and interface between autism and mental health difficulties. I learn something new every day from the children, young people, families and professionals I work with . I think it is important for all us to acknowledge that we will never stop learning, never know all there is to know, and that we are all fallible. I can’t change the world, I know that, but I hope I can raise some awareness and reflection and contribute in a small way to improving understand and support for children and young people on the spectrum.