My journey towards autism and mental health support for my son

Topics mentioned: autism, anxiety, CAMHS, school anxiety

About: Mandy reflects on her experience of getting a diagnosis and finding support for her autistic son, and shares where she's found help along the way.

Somewhere along the way there was a beginning to our journey. When he was younger and starting with behaviours that were being picked up by those around him, both by me and the rest of the family. High pitch squealing, obsessing over everything from StarWars to Lego figures to the shape of teaspoons. Beige food, sleep disruptions. The list was never ending.

His need for knowledge could leave me exhausted. He was talking and reading fluently by two and a half. He lived and breathed the alphabet and was seen as a gifted child by the head of his nursery and school. His gift was autism. But there was also mental health deterioration, which led him onto another road in his journey.

By late 2019/early 2020, changes in his behaviour were more noticeably giving concern. The world was changing with Covid and our world was crashing around us with my son’s mental health in rapid decline. He was experiencing severe anxiety, paranoia, panic attacks, fear of the outside world and agoraphobia. It was swallowing him up and making his world lonely and scary, with no one allowed in to help him.

Autism was eventually diagnosed, along with complex mental health. I thought that the help and support he so badly needed would now flood in … but it never arrived. How naive I was!

I fought every week. Phone calls, emails, knocking on doors for support, help, understanding and medical advice. But 95% of the doors were closed, with reasons ranging from, “he won’t engage", to “he needs to leave the house and come to us” or, “he is too young or too old”.

Mostly it was me as a parent who got offered the support and help, so that I could support my son. But there was no one-to-one support for him, no matter how horrendous he was feeling in his day-to-day life.

Eventually we found several agencies who could help online. And the horrendously debilitating three-year wait for CAMHS began.

Early in 2020, our GP requested that my son have an autism assessment. But this did not happen until mid-2022. As CAMHS are so pushed, they passed us to Healios for online assessment and support. They did a few calls and chats with me first, then a one-to-one session with my son privately in our own home (this took three attempts as he refused to engage). It was perfect for him, as he was not venturing outside or feeling safe if anyone came to the house.

A few weeks later, the call came confirming ASD and a full report was sent out. After that, we had three more online appointments to see how things were going. But that's where the support ended with Healios, which was extremely difficult.

So … I used everything on social media and Google to see what was out there to help us. We were hopping backwards and forwards, and in the end, self-referral was the only way to get the help.

I struck a wee gold nugget when I spoke to a woman at one of our Healios appointments. She pointed me in the direction of Barnardos, which led to me signing up to a course on ‘Parenting and ASD’. This was run by a marvellous woman, and the other parents on the course were a great support network. They had very similar stories and it was such a relief to talk, listen and be understood. This was a lifesaver for me. I cannot thank the team enough.

There is so much more available now, it's just about finding it. I hope it is easier for people just starting their journey. I’ve found some other helpful organisations along the way:

So here we are today, August 2023, on another road along our journey. My son attends CAMHS weekly. To us this is like winning the lottery. Everything is now focused on helping him.

He has never returned to school full time for education (fourth year now), but he attends a very small educational needs support group run by the school and council. He does two hours, two mornings a week. And on return from summer break he will attempt to go into the school building for one period in the Additional Support Needs (ASN) room.

These are huge, massive achievements that we never would have thought could happen. We’re taking tiny baby steps, but we’re definitely on the road with his journey. We hope it’s the right road to being a positive one!