Autism and Mental Health - A Parent's View
This has been a tricky story to write, it's been a long journey and to put it in a short blog doesn't seem to do the serious nature of mental health in our young people justice.. The emotions, heartache and stress of watching our son struggle with mental health issues has taken over our whole family.
It has turned us upside down, it has impacted all of our mental health, it has exhausted us, it has frustrated us and made us angry, upset and confused. But it has also made us stronger, more resilient and more compassionate, although it hasn't always been easy to see.
Our son was diagnosed with Asperger's Syndrome at the age of 5, just after going in to P1 after a tricky transition from nursery. Primary school was a difficult time, so academic and able but he could not cope with the busy classrooms, his more rigid thinking style - the need to repeat the same work over and over again (when he had gotten it right the first time so why do it all over??!) and the constant struggles over homework (why would I do school work at home - particularly when I don't need to practice it because I got it right the first time!). He had one friend in his class - and I know through other families experiences we were lucky he had that - other kids were a mystery to him and we lived the lives of very many families with autistic young people.
We managed, and learned from him, he thrived in his own beautiful way and throughout the years even when things were tricky we made adjustments and got through.
Then his mental health started to deteriorate. Getting ready for his transition to secondary and he began to withdraw, to refuse going in to school, to have physical outbursts more frequently in class, directed at teachers. Full of self loathing we heard daily how he hated himself and wanted to die. We cried with him, we cried together when he was in bed because we didn't know how to make this better, we had to sit back and watch while our funny, personable, sociable (on his terms!) little boy became a frightened, angry child who couldn't even trust us, his parents.
Our school were fantastic and so supportive of him and of us as parents but we all knew that taking homework away from his stress, letting him go to the canteen five minutes early and all the usual adjustments we had made over the years weren't going to cut it. We know it was different It was prolonged, it was impacting his life and it was scary.
Eventually, with support from our school we got an appointment at Children and Adolescent Mental Health Services.and after a surprisingly quick process it was official, our beautiful boy was diagnosed with Anxiety Disorder. Then we faced the worst part - to medicate or not to medicate. To be honest we went back and forwards deciding this for weeks, the pros vs the cons, speaking to family and friends. We made the decision to do it and so at the age of 12 our boy started taking anti depressants. And they literally saved his life.
I am by no means saying that medication is right for everyone but for our son, who became more and more inflexible as his anxiety grew, meant that he could never develop his own strategies for coping as he was so anxious literally all the time. The medication has allowed him a window of opportunity for development, to learn to manage his anxiety and learn from experience how to cope.
That was until exams hit! Last year he went into exam year undertaking his National 5 qualifications, his anxiety rocketed and didn't settle, he ended up passing all of his exams with flying colours, through perseverance and many tears and anxiety before each exam, but going back to school for S5, the start of his Highers started a continued dip in his anxiety. School refusing, confusion over whether to stay at school or not, being asked to make decisions about his adult life when he was still emotionally and socially functioning much younger than his 16 years - it all took a toll and we found ourselves back at CAMHS and left with not much more than an increase in medication.
For an autistic teen to find their way in the world, deal with all the complexities of friendships, exams and everything else that happens in secondary school but with an inflexible thinking style, emotional and social skills that are often younger than their chronological age, it is easy to see why so many of our young people have a higher rate of mental health challenges compared to their peers, and the answer can't just be medication.
Unfortunately, with the current lack of resources within CAMHS they were unable to offer our son any long term support other than medication. A few sessions with a mental health worker who doesn't specialise in autism does little to change the outcomes for our young people. This is where we had invaluable support from Perth Autism Support. Not only has the family support team been by our sides as parents but they have supported our son with one to one support sessions, understanding his emotions and anxiety relating to real life situations for him with an autism knowledge and understanding we have yet to find within the health or education services (that is not to say there is none, or that there aren't very many compassionate, caring staff who want to do their very best in a system that is under resourced and inflexible to the needs of young people with additional needs). He has developed wonderful peer friendships with two other young people, he has found his tribe.
That's not to say PAS has been the silver bullet either. He still struggles with anxiety, he still has sleepless nights thinking he is not good enough, he still gets angry at himself, he still regularly phones me from school being unable to make the most simple decision, because his anxiety is so high, telling me he wishes he could switch his anxiety off with a button.
I wish he could too. But the theme of Children's Mental Health Week 2020 is "Find Your Brave" and this is what he does every day. His resilience and determination to get out of bed and face his anxiety every day, puts me to shame, he is stronger and more brave than I will ever be. His brave will get him through, it will be hard but we are here to support him along with the wonderful team at PAS and his amazing friends.
He has Found His Brave and as his parents we couldn't be more proud.