Keighley Tansley: Adjusting to an ASD diagnosis for my deaf son (BSL)

Hi everyone, I am Keighley. I’m a profoundly deaf mum of three boys. We live in Essex by the seaside and I work as a childminder.

One of my sons is also deaf and the other two are hearing. As a family we are all oral, but we use Signed Supported English/British Sign Language as a back up form of communication too.

My son and I both have cochlear implants. I just have the one implant as I was implanted as an adult but Leo has two due to having them when he was a toddler.

As I work in childcare I have been around children who have ASD  (Autistic Spectrum Disorder) but it still came as a shock when my own son was diagnosed with autism.

When Leo was about 18 months old we started questioning some of his behaviour. His emotions were over the top which was the main thing we noticed and then as he was getting older, we noticed he was struggling lots with friendships.

He didn’t understand jokes or questions. He wouldn’t understand simple sayings either or get his mind round things that weren’t black and white so to speak.

We had lots of support in the form of a teacher of the deaf and a play worker who sign posted us but they always just told us his challenges were because of his deafness.

They gave us lots of resources to work on his emotions and building friendships and we were eventually referred to deaf CMHS.

Leo was – at this point – around six or seven years old and was putting himself in situations which could be dangerous. Up until this time all of his support was accessible as they were still saying it was due to his deafness so we were kept under “deaf” services.

Once his care was moved over to ADHD/ASD services things become more of a struggle. I had to remind them to book interpreters for me at appointments. This meant things often got delayed when they forgot to book an interpreter.

Sometimes they had to re arrange appointments and one appointment was over video call. I thought it would have captions but there were none so I had to end the appointment and wait two months for a new face to face appointment.

Leo’s case wasn’t straight forward as a lot of the earlier signs were dismissed as he was deaf and they assumed it was all down to his deafness such as how he struggled in crowds and found it hard to make friends, for example.

The school didn’t see the struggles we saw in Leo, so it took us even longer to get to the bottom of why Leo was struggling. At first we suspected ADHD but they came back and said no he didn’t present as having ADHD, but had traits of ASD. That was when he was put on the ASD pathway.

From a young age Leo had a lot of therapy in place and I believe this has helped him mask his ASD. It is still early days following his diagnosis and we are still adjusting as a family.

We are still trying to find out more information, I am sure there must be accessible information somewhere out there about ASD in deaf children!

Aside from all of this, Leo is an amazing confident boy; he loves football – especially West Ham – and he really enjoys art and crafts. He also loves to sing and dance all the time.

It’s been a lonely journey, I think Leo masked his difficulties so well that when he did have melt downs people didn’t believe me when I told them he was struggling or he was overwhelmed.

This has affected relationships as I often come away from playdates feeling upset and not wanting to put myself and Leo in that situation again.

One big positive is we have found an amazing football club where other children have ASD and are also deaf or other have disabilities. Leo has been going for a few years now and it’s helped him so much.

If anyone reading this has just received an ASD diagnosis for their child, remember they are still the same person, what you love about them before is still what you love about them after.

By Keighley Tansley