Mental Health and Autism

ABBIE’S STORY

I got my diagnosis when I was 31 years old. I felt different for as long as I can remember. My mum was a fantastic support and my anchor for understanding myself and people. Despite this, I started feeling not good enough around age 6, self-harming at 11 and suicidal which peaked at age 21. As social pressures, expectations and life changes came at me. My distress was always downplayed, I was told I was an anxious child who thought too much. Went through hell in the various services from age 11 to 31. I saw countless counsellors and psychiatrists in that time, and no one put the pieces together. I was being given modalities that couldn't work with my brain.

When I was older, they used my differences in personal expression to suggest I had borderline personality disorder. All until a practitioner at a mental health assessment asked me about textures, and she said " I doubt your problems were anxiety and depression. I'd put money that you're autistic". I was assessed soon after and I was autistic. I feel that moment was the start of being able to live my life.

I believe early mental health is imperative! Society is not geared for autistics in mind, we must get help in those early years to build a strong sense of self and a solid foundation of acceptance, to know how our brains work, to know how to self-advocate and set boundaries. The best supports I had were ones that made me feel part of something, a community-based approach, on my terms, co-produced with me.  

Realistically we need to protect mental health and strengthen rather than "fix", get it started with that early diagnosis, help support family "come to terms" and understand the diagnosis and teach family and kids what is their sensory diet, and how they can advocate for themselves! There are so many community groups, charities and places that could join to provide life-long support and scaffolding for our autistic community.

A PARENT’S STORY

My son is now 20 and was diagnosed with autism at the age of 3, he has other co morbid conditions, one being anxiety, and another is OCD. Mental health has been one of the major issues my son has dealt with from the age of five. He was with CAMHS in his mid-teens, and they signed him off with the reassurance that we could link in and get help when needed, but this did not happen. I was left trying to be a therapist, behaviour specialist, psychologist, and counsellor and lastly a parent. In any other environment outside of our home my son is left feeling "less than" and has done for most of his life, in a society not built for him. 

Society is not geared to be sympathetic to the neurodivergent and while I love my son, I am not a specialist, and I often wonder if I help or hinder his mental health as I am not trained to deal with it, even though I will always try. That is a massive weight to carry for any family. He’s a gentle, beautiful soul that has been failed by many statutory services and I refuse to sit back and let the world dim his light, so if I have to train as a psychologist then that is what I will do as there is little to zero help available and its postcode and referral dependant.

I am aware of the state of mental health services for everyone but young people who are autistic are often not able to seek help like the rest of the neurotypical population. This leads to many parents having to leave work or reduce hours then resulting in low income and low support situations where the whole family is affected. We are one of those. For my son, he did get support over the years from CAMHS, but mostly it was techniques, skills, and strategies that I researched or found myself. CAMHS are not autism specialists, often they do not have the time to allow the children to adjust and acclimatise to the therapy so are often signed off as not being able to engage, which is unfair. And, as an adult he has received no support at all and has been passed around counselling as he needs more condition specific support from trained professionals but there are none.  

It’s not just early mental health support that is a necessity, it is having appropriate autism specific, mental health support, that is needed. We have had early support, but it needed to be ongoing, autism specific and more intensive. There must be autism specific trained specialists with a single clear point of entry, a structure and pathway to ensure autistic young people and adults are not passed around inappropriate services, having to relive and recant their mental health history to services who then say they can’t help, this is traumatic, and they relive their experience each time.  

JANICE’S STORY

“Megan received her autism diagnosis in 2018 and since Megan was four years of age, she started self-injurious behaviour. Megan can withstand the pain of biting herself repeatedly and she now has visible scaring on her arm at seven years of age.

Over the last two years Megan's OCD, self-injurious behaviour and anxiety has escalated to an unmanageable level. I have begged for help and training, but we have received zero help from the Trust, which has resulted in us having to pay substantial amounts of money to see private OT's, speech and language therapists, craniosacral therapists and seek alternative therapies and supplements. 

I'm fighting every day to get her help she is entitled to; no one takes responsibility, and we are bumped from service to service. I have contacted Megan's GP three times and asked for referral to CAMHS, which has been refused each time. There is a huge lack of understanding on how to support autistic children that also have mental health conditions.

Early mental health support is vital, Megan at seven years old already has self-injurious scarring on her arms, what will that escalate to even in 2 years’ time. If we don't get in control of this now, she will hurt herself with catastrophic consequences. As parents it has put an enormous stress on us and impacted us hugely mentally, physically, and emotionally. The professionals do not realise the impact this has on families. Megan mental health impacts her brother, he misses out a lot because Megan self-injurious behaviour becomes a priority, and he is just expected to deal with it. There is no help for families regarding this.

It is not acceptable for a child to engage in self-injurious behaviour just because she is autistic. That should not be acceptable but unfortunately it is and that needs to change now. Please listen to parents and give autistic children access to therapists and therapies that understand autism and know how to appropriately adapt and change treatment to suit individual need.”

Elizabeth’s Story

“My son Ryan is 16 and received his autism diagnosis in January of this year after being on the waiting list for years. He first was referred to CAMHS in December 2019 after he first self-harm.

Growing up Ryan struggled in school and staff found it difficult to manage him in the classroom. They seemed unsure on what to do, and always rang for us to pick him up – they didn’t have the knowledge or the resources to help Ryan or myself. He would sometimes lie on the floor at school, had sensory challenges with uniform and his coat, and he would try to isolate himself away from others, but as he was doing well in class and intellectually, he appeared to be doing well.

I kept asking for help from anywhere I could, I felt like I was going crazy, and no one believed me. It makes your doubt yourself as a parent. At the time the GP and the school couldn’t see what I could see, they felt there was no need for Ryan to get any additional support. As he transitioned from primary to grammar school Ryan really regressed. He started to have trouble sleeping, he became unable to talk the way he used to, he didn’t laugh, and he lost some ability to write. The school saw it that he was fine however, I saw that he was completely overwhelmed. He couldn’t maintain friendships, felt completely isolated and unsupported, and was telling us that he hid in the bathroom at break and lunch.

All these experiences together built up to Ryan self-harming, it was very traumatic for him and for us as parents, and as a family. There is so much trauma in seeing your child struggling, and not knowing how to help them. The whole process was awful, the way he was treated and the way I was treated was very damaging. As a parent, I felt left alone. There is such a lack of awareness of autism, and how to help an autistic person through difficult times. Ryan did not feel safe or welcomed during his experience with the CAMHS team, he generally responds better to warmth and feeling kindness from people – this environment was quite hostile and cold. He felt like he was being interrogated and really struggled with the expectation of verbal communication. It kept being stated that Ryan refused treatment however, as an autistic person, he is physically not able to take part in talking therapy and there were never any changes made to do it differently.

Early intervention would have been life changing for Ryan and us as a family, Ryan needed specialist support and help, and he didn’t get it. Everyone we met with missed the link between anxiety and depression and being autistic. There were no allowances given or changes made to tailor it to Ryan, and we were continuously pushed from service to service, from GP, over to CAMHS then to the ASD team and we felt like we were going round in circles. It got to the point that we had to pay privately for mental health support, putting us in debt. Finally getting an autism diagnosis has really helped to process things, and enabled Ryan to come to terms with it. He was able to open up more about it and it has given him validation. He went through school undiagnosed, and this led to years of pain, but now people can take on board his struggles and try to understand it and help him.

Our experience of the mental health service for an autistic person is not a positive one. We need a more proactive approach; the standard approach does not suit autistic people. It is unacceptable for autistic people to be discharged from mental health service if they cannot complete treatment the standard way, and Ryan was unable to do it that way. It is better to try and prevent things from escalating from the start, instead of repairing the damage afterwards. We need staff that have knowledge of autism that can see the difference, having anxiety and depression and being autistic are different and need to be treated separately. We need a service for autistic people that is inclusive and inviting, somewhere they feel listened to and supported, in whatever way they need.“