This week March 29th - April 4th 2021 is autism awareness week and today April 2nd is World autism awareness day. Not sure why we need awareness I’m sure the world is completely aware, it’s just not accepting! Or celebrated. Not always anyway.

I’m going to talk through Charlie’s diagnosis journey. I always knew there was something about Charlie I just didn’t know what. He was more challenging than my other 2 children, more clingy, needed more attention, less responsive and impossible to discipline. Just before he turned 3 we moved into a new house, it was the 3rd house we had been in and I had changed my job and my hours too (several times) it was so hard trying to balance working full time and caring for 3 children under 10 so I had to make tough decisions. Charlie also changed childcare providers too. Luckily he was then at the same childminder from 2years old until 5 and full time school.

Anyway, I digress when he was 3 I had a terrible month during December, life was hectic 2 children at school needing nativity plays, Christmas fayres, Christmas carols, having children at mainstream school at Christmas was a really heavy busy time. Working, and trying to prepare for Christmas was impossible as a single mum and Charlie would not settle he became intolerable. After Christmas I made an appointment with the GP and expressed my concerns, they put in an Early Help Assessment (EHA) and we were given a family support worker. She was commissioned to work with us for 10 sessions. Now, when I think back to this it was absolutely shocking how little that support is. It’s 10 hours. That’s it, 10 hours. She assured me I was doing fine and a great parent and there was no need to go on any parenting courses (how this narrative would change). Of course, she saw the example of my older children that had no issues and were functioning at a higher than average ability so assumed that there was no need for any other intervention as I was quite capable. We were discharged.

At around this time life looked like :

Sleep was horrific, I had to co-sleep with Charlie. There was no other option.
We tried the cinema, he screamed and cried relentlessly until I left. Taking the other two very upset children with me.
He didn’t like to get dressed.
Had speech input as had a significant speech delay.
Screamed uncontrollably every time I tried to get his hair cut, cut his nails or bath him. Personal care was high on the list of daily struggles.
Went to the national space centre when he was 2, became unsettled while in the planetarium, so I had to take him out and leave my other two children in there with my cousin.
Going anywhere became intolerable, so it was better to just not do anything.

Now I can see clear evidence of his struggles, yet autism was never mentioned and was never suggested by any professional that came into contact with us.

A year later he was heading into nursery. This is the same nursery that my daughter had been too, so the manager pushed for speech and language input and made sure that he had the support put in place. It has been invaluable to document just how long Charlie’s social and communication difficulties have affected him. School is where the challenges really began.

You can read more about the school story in another blog.

Mainstream school started in September 2016, by February 2017 due to difficulties I had moved Charlie to a new mainstream school. Within 3 months that placement had broken down irretrievably. It was when I moved him to his new school that we were yet again given an EHA and the same family support worker. This time she had a different take on things, this time she knew that we needed additional support and we needed the ASD pathway. Firstly, she organised the DLA forms, this was intricate in us moving forward as a family as it meant I could leave work which was incredibly painful for me as I had been with the NHS for almost 8 years. But ultimately the right decision.

This was when autism became a common word in our house, and I started to understand the complexities about what Charlie might need. Once I started parenting him as an autistic child I found the behaviour shift, his behaviour became more manageable and I understood what he was communicating to me. It was a huge barrier that we had overcome. I had to research and learn everything I knew about autism, there were no resources open to me. Charlie was undiagnosed, so although he was under assessment during this period all doors were shut. There was no help, no support, no resources unless I funded it myself or set about finding it. The support was non existent from anywhere and that is where I feel this journey failed us all, Charlie, myself, and my other children separately and as a family. As we all know early intervention is the best intervention.

Once we were awarded DLA I assumed it wouldn’t be long before we saw a community paediatrician, how wrong was I? We wait a year to see the first paediatrician and a further year to see the 2nd. We were under diagnosis for 18 months. Charlie was finally diagnosed with autism in October 2019. He needed a multi disciplinary team to diagnose him, paediatrician, speech and language and a clinical psychologist. After the 2nd paediatrician appointment I was told there was a 16 month waiting list to see clinical psychology. In between all of this we had so many traumas with school as explained in the school story blog.

We received no respite, and the school situation was dire. Just 6 months into this 16 month wait I had a breakdown, nothing was happening and we were in crisis daily with challenging behaviour. I began a campaign to speed up Charlie’s referral and diagnosis, I wrote to the MP and I started a gofundme to raise money myself to get him privately diagnosed. I lodged complaints with everyone. It was incredibly draining advocating for him at this level and it had a huge impact on both my mental health and our family life which devastated me. This did not speed up the clinical psychology department but instead allowed the paediatrician to make a formal diagnosis with input from speech and language therapists, school and a private occupational therapist.

Since diagnosis, I was handed a parent pack with some details of local autism services. I wasn’t ready to look at them at the time, everything was so overwhelming. Although the diagnosis made sense, nothing prepares you. It is a lifelong condition and Charlie won’t “grow out of it” he will always be autistic and he is my superhero. Life is so challenging yet we find happiness and strength in so much that we do together. We have had to adapt our lives to support Charlie and regulating and understanding autism is paramount to us living our best lives. We don’t know what the future holds, I’ve never had an autistic child before Charlie this is all new territory I am just winging it. Below are some links that might help.

National Autistic Society (autism.org.uk)

Contact - for families with disabled children | Contact

Signs and Symptoms of Autism Spectrum Disorders | CDC

https://www.nottinghamshire.gov.uk/media/2421/nice-guidelines-on-asd-signs-and-symptoms.pdf

Georgina x