In 2017, my eldest child was finally diagnosed with Autism and ADHD, we had a finally completed our journey of ‘getting a diagnosis’ and was about to begin the journey of ‘understanding you better’

The ‘journey’ had started in 2014, when a GP had asked whether my son was autistic during a routine appointment. This led to a referral to the child development team although it required support from the primary school he had just started. I began to realise what we could see at home was different to what was identified as school. My son appeared to be two different people.

Getting support from school was difficult however, when the teacher and SENCO completed the questionnaires provided by the child development team, it became apparent that our son was having difficulties in school however, he did not show strong emotional meltdowns in school instead he would hold in his feelings until he got close to his home… Everyday.

Our son found his school very challenging by the end of 2016 and he was struggling to contain himself all day. This led to Child and Adolescence Mental Health practitioners becoming involved in the difficulties he was facing. His life at school had been in fight/flight/freeze mode since 2016 and his mental health started to deteriorate therefore when he was diagnosed in 2017, there was some hope he would start to understand himself better, school staff may start to understand his little ways of doing things, and the idea Autism would be able to explain things better to those involved in his daily life.

At home, we began to understand him better we started making more adjustments to how we parented, encouraging him to be himself and we were engaging in as many ‘parenting classes’ as possible, mainly to understand behaviour why and how to manage. However, whilst adjustments and ‘acceptance’ were in the family home, it became apparent this was not to be reciprocated in other environments.

By 2019. our son had reached crisis due to the ongoing hurdles faced in the school environment. He was in regular ‘isolation’ and could not cope at lunchtime, he was attending school for 3 hours per day. He had an EHCP being processed, due to the back and forth discussions around the limited support he was being offered. Arguments between the school and the Local Authority about who was responsible for the funding etc.

Finally in 2020, he finally had an adequate EHCP with a trained LSA, which offered hope however, waiting almost three years for a diagnosis, two years for an adequate EHCP and five years for a member of staff with training and acceptance – it had taken its toll on him. In 2020, the best thing in terms of education happened for us, the schools closed and it was time to concentrate on building his confidence and self-esteem, time for him to understand it was not him who was the problem, nor his diagnosis but instead it was the environment. He had been identified as having a negative relationship with education but, he loves learning and discovering new things (albeit quite specific learning) so we focused a lot on what he liked, why he liked it and built his special interests back to his centre.

One major thing I learned during the journey was without support and without recognition to who an individual is, without acceptance, the fall down is really quick but to climb back up it can take triple the amount of steps.

We must encourage our children to be who they are and help them to appreciate who they are….

Links4Alliance was created as we identified so many gaps of information especially in specific areas and local authorities. We aim to close these gaps through relationships, providing links and creating parent and carer groups, where they are missing.