Our story part one – The long process of getting my son’s ASD diagnosis 

A happy child running up a hill with the sun setting behind.

This is the first in a series of posts that describe how we got to where we are today.

When my son was young I didn’t put him into childcare or the school nursery because he really couldn’t cope with being around so many children. He was happier at home and I worked from home anyway so I was happy to look after him. Because he was my second child and health visitors are overworked where we lived, I never even saw his. The only medical input he had was as an outpatient at the  immunology department of the local hospital and from a dietician due to having food intolerances.

When he first started school in reception he was nearly five and it began to become apparent he would need help at school. Unfortunately I hadn’t taken him to be diagnosed before. I think I actually didn’t realise I needed to, but at the age of five I realised that my son needed help in school and I wasn’t going to be listened to until he got a diagnosis. I took him to the GP.

I remember sitting there in the surgery as my son solved a rubix cube and completely blanked the Doctor. I’m not sure how much the Doctor knew about Autism but I managed to persuade him we needed referring and that my sons issues were not due to my marriage breakdown the year before. 

My son was referred to a comnunity Paediatrician. Then began the waiting. At the time where we lived the waiting lists were very long. We initially waited nine months for his first appointment. I was a little nervous but again, rather naively thought at this appointment they would be able to help me.

We waited outside for forty minutes because they were running late. Forty minutes seemed like forty hours of my son getting more and more concerned that he didnt have a drink and didnt want to be there. By the time we were called in to the Paediatricians room my son was very distressed.

The paediatrician had a very strong accent and asked my son lots of overly complicated questions. My son struggled greatly to understand what he was being asked both because he didn’t understand the words and because he didn’t understand the questions. To be honest I struggled to understand too and I ended up getting the Doctor to repeat himself and then interpreting for my son who then tried to answer the questions. I still to this day have no idea why he was asked any of it or what relevance that appointment had to anything! The paediatrician told me nothing and said he would make an appointment to see my son again in six months. I went home thoroughly confused and feeling like it was all a waste of time.

Six months passed and I heard nothing. Another three months passed and I rang up to ask what was going on. I was told that my sons Paediatrician had been struck off for incompetence and all the children under him, including my son, had been put on a waiting list for another initial appointment with a new Paediatrician. I enquired as to how long this waiting list was and was informed six to eight months! I actually got a bit upset on the phone. My son was not coping at all at school and school were dealing with him as if he was naughty and now I had to wait another eight months. Fortunately the receptionist was very understanding and she told me she would mark him as priority as it wasn’t our fault he had been seen previously by someone that didn’t know what they were doing.

Six months later I got a letter saying my son had an appointment in three months time, with a new Paediatrician. This time I was less hopeful!

We turned up on the day of the appointment armed with drinks, snacks and entertainment and fully expecting the long wait.

We were eventually called into the surgery. This time my son was a little calmer because I had been more prepared for the wait time. His new Paediatrician was lovely and the appointment couldn’t of been more different to the last one. She made my son feel comfortable and asked me about what was going on. She told me she couldn’t understand why my son had not been referred last time and put in a referral to CAMHS for an ASD assessment. She also said she would write to my sons school to try and help them understand, and she referred my son to Occupational Therapy. At last we were getting somewhere. I left feeling a lot more positive about the situation.

My son was now on a new waiting list and it was another long one!

Over six months later I was sat in a room describing everything to a psychologist from CAMHS. She was most surprised she hadnt met me sooner! She was also almost immediately convinced that my son had ASD and explained the diagnosis process to me. The next step was for them to meet with my son, then go into his school to observe him whilst collecting questionairres from me and his teachers. Then we would have another appointment. This whole process took a while and by the time my son was eventually diagnosed with ASD and SPD he was almost nine! But we had a diagnosis and that was the main thing. Now I could get my son the help he so desperately needed at school…or so I thought – it actually took me another two and a half years to get my son an EHC Plan, but that’s another story.

What was going on with my son at school all this time?

He was living a nightmare in a school that he shouldn’t have been in. He couldn’t cope socially or with the amount of children and noise in the school. He was in a heightened state of stress all day and was having meltdowns constantly and being punished for them. He was trying to escape from school every day and I had to take him there kicking and screaming every morning. No measures were being put in place to help him cope and the head teacher was convinced he was naughty and all the time I was being told that yes, he might need one to one support but they didn’t have the funding so they couldnt do anything. They wouldn’t apply for funding because he didn’t have the proof he needed to get it.

Did finally getting his diagnosis change anything at school?

On the whole unfortunately no. Although it provided some understanding for his class teacher and gave me more ammunition to fight for help for him, and to start my long battle of trying to get him out of mainstream education. I am going to publish a post about that part of our story tomorrow. 

Thankyou for taking the time to read this post.  If you would like to read more then feel free to follow my blog or like my Facebook page which I keep up to date with new posts as they are written. You can also find me on Twitter @KidsOnTour1

Published by Autism Kids on Tour - Autism without limits

I have two kids and love to show them the world. We dont let autism limit us in our adventures! I write about our adventures and include tips on how suitable activities were for children with autism. I also write more autism specific posts.

6 thoughts on “Our story part one – The long process of getting my son’s ASD diagnosis 

  1. Your story is sadly all to familiar to me. It is far too difficult to get our kids diagnosed and the help they need. My son was 4 and in pre-school when diagnosed as HFA with ADD. It was hard at first getting him what he needed but as we learned and the school learned it has gotten better. I hope your son’s school begins to listen and learn what he needs.

    1. Thankyou. That particular school was never going to be ok for him because he just couldnt cope in mainstream but Ive managed to get him into a SEN school now and he is doing much better 😊 You are so right, it is far too difficult and takes far too long. Im glad your sons school has got better too x

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