Our Life With Autism

By Georgina King | Published on December 15, 2020 | 5 Minute Read

Charlie was always a clingy baby, different from my other 2 children and a lot more dependent. However, we did not realise that autism may have been the cause until he started school. He was 5 when I first started to realise the impact that Charlie’s sensory, communication and social difficulties had on his daily life. At this time, we had increased daily violence and challenging behaviours at home, but never at the school. I naturally thought that it was because he was masking at school and that the behaviours were shown at home. I changed his school. This led to a breakdown of placement due to the new school not managing or recognising his complex needs and a permanent school exclusion. Charlie was 5 and in reception. It was incredibly traumatising for the whole family. From there, we were put on the ASD pathway and into a pupil referral unit for excluded children. What happened next was a tiring, exhausting, and stressful journey to get Charlie the diagnosis and support he needed. It took a further 2.5 years to get the autism diagnosis and 3.5 years, 7 versions and a tribunal appeal to get the right EHCP and a further 2 failed educational placements to get an independent specialist school. We are now at the school, but transition is slow and has at times stopped altogether. I fear no one will be able to support us fully because the resources and services just aren’t out there. Without the help and support, Charlie will be at a huge disadvantage and will not be able to live a life of quality and inclusion. I advocate for him continuously to ensure we receive this. The response I have had from professionals has often been a closed door and an unwillingness to help and support.

Since diagnosis, I have found the SEN and ASD communities filled with love and support. I regularly post our struggles on social media platforms and everyone is so helpful and supportive. I have learnt to live a life where Charlie’s sensory needs are always accommodated for, and he is at the forefront of every decision I make wherever we go, whatever we do, and however we get there. By putting Charlie’s needs first in our everyday lives, it really does make a difference to the level of quality of life we lead. I don’t want his difficulties to hold him back and I want to embrace his uniqueness and make sure he can live a life as full as can be. At times it is increasingly difficult. Access to ASD and SEN friendly services are often scarce. Although they do exist, they are very limited and at times they are inaccessible to us as a family. Like SEN sessions at 9am on a Sunday morning, is not being inclusive even when they think they are. I feel like all primary schools could benefit from the most basic of autism training, and then they could make adaptations to the child’s individual needs more successfully and more children will benefit from this. The lack of awareness in educational settings is disappointing and I would personally like to see more educational facilitators advocating for awareness training in SEN education.

"I have learnt to live a life where Charlie’s sensory needs are always accommodated for, and he is at the forefront of every decision I make wherever we go, whatever we do, and however we get there."

As a family, I feel we have grown, there were some very dark times while we were waiting for the diagnosis and an educational provision and at times, I worried whether or not we would have made it through. It has been a learning curve, and my eyes have truly been opened to the challenges that SEN and ASD parents and carers have. Prior to diagnosis and my son’s difficulties, I had viewed this community with rose tinted glasses assuming that parents that needed respite got it, children that needed special education automatically received it, and those that claimed Disability Living Allowance received it with no issues, no matter what their conditions or illnesses were. I was very wrong: everything is a battle and there is a fight for every service that you wish to receive for your child.

Despite the battle and need for recognition for my son’s challenges, the SEN community, predominantly the social media platforms have been very helpful at supporting us and making sure we are accessing the right support and aware of the information that we need. This has been a lifeline for us.

As a family, we have developed a way of living that makes sure that autism is celebrated and things are done with the forefront of knowledge that includes trying to prevent triggering social situations that may lead to sensory meltdown. This has made life easier. By making small manageable adjustments, I hope that my child will continue to flourish in whichever environment he is in.

About the Author

I am a single mum of 3, with the youngest child Charlie having a range of SEN and autism. I live in the East Midlands, and our lives were rocked when Charlie started school as he needed such a specialist provision to educate him.