Autism diagnosis: A Parent's story

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What was your experience of getting a diagnosis?

A hard experience! It started when my son was aged 3 and nursery reported concerns about him missing speech markers and showing behaviours that made them think he might have autism. I initially felt very defensive as a parent, especially with him being my first born as I had no comparison, but eventually came to terms with him having additional needs and pushed for all the support I could get him.

He started off with being referred to speech and language therapy, a quite intensive course. The feedback indicated the need for an ASD assessment. There was a discrepancy in the views of the professionals and he was initially diagnosed with a speech delay. Their reasoning for this was to avoid giving him a lifelong diagnosis and therefore decided to be cautious. However, this caused him difficulties in his early years as he went to a mainstream primary school on this basis and really struggled. He was on 2:1 support and spent more time out of the classroom than in as a way to cope. It was not sustainable. Eventually he was given an observation session in a social setting and on the basis of this they changed his diagnosis to Autism, fortunately a few days following this he was given a place in a specialist provision that can support him until aged 18 if he chooses. It was a big fight and a really hard time for all of us.

And how is he now?

Happy and confident. He still has struggles of course, although these struggles have changed as he has gotten older. In the past he had more difficulties with being understood and managing communication and sensory needs. Now he is older it is more of a challenge to understand others and the world around him.

I can see him being able to live independently now when he is older. And I don’t think I would be saying that if he didn’t get a diagnosis and a proper specialist provision. As a parent and someone working in the school system I see the difference between kids who are diagnosed and get the support they need versus the kids who are still struggling to manage mainstream without any support. It’s sad.

What would you say to parents in a similar position to yourselves?

I believe it is important to get a diagnosis to get the help and support you as a parent and your child need. Not only can this help with schooling, support and provisions it’s also about helping your child understand themselves and the world.

I see a difference between kids with significant and non significant needs on the spectrum. The kids with significant needs have a more obvious need for support in the system with education etc. however both groups need help in understanding who they are and why they might find things difficult, especially relationships.

It can open up a way to celebrate difference and understand that it is not bad, you are you and celebrate this.

It can also help your child navigate the world and understand that they can be different, and they do not have to put themselves through things socially they might feel uncomfortable with. My son manages this very well and feels confident enough to not push himself into social situations he finds uncomfortable. I have learnt from this myself as an adult too!

School doesn’t seem to fit some kids and we talk about how school can be horrendous but being out in the real world can be more accepting. I feel like it’s a good thing to talk about as a family and we have lots of discussions.

It’s a hard process and as with all parenting stages it is important to look after yourselves and each other. We found it helpful to have a system where we could “tap out” and “swap in” as parents/carers if we felt we were reaching our limit on patience and vice versa.

We also took opportunities for some down time and getting away from the kids (although that sounds really bad!)

We found it really important to say no to pleasing others, if what was expected of us (like a wider family day trip/ big Christmas gathering) was not going to be manageable for us and the kids, we learnt to say no. And that needed to be ok, although it is hard when some wider family members do not seem to understand.

I would also say try not to shy away from the hard stuff. It can feel really easy to put yourself into a cocoon and avoid hard situations, but small steps in making your circle bigger really help. A family day out for us might have ended after 30 minutes to start with because of a meltdown, but the next time might be an hour, then and hour and a half. And then eventually you are going on a family holiday together.

It took us a while to find the balance.

It will get better and it does get easier.