Works at The Aspire Wellbeing Centre
Personal Assistant to Keith Edmondson & Jenny Daniels
Son: Neziah 18 (eldest of 2 children)
Diagnosed: 10 years old
When Neziah was young, there was not anything that specifically stood out to me that would’ve suggested Neziah could have any SEND needs (Special Educational Needs and Disability). He developed as every other child would’ve been expected to do.
When Neziah was around 3- 4 years old, he wasn’t really speaking that much and as he was my eldest child, I had nothing to compare his speech development to. He ended up having Speech and Language Therapy to help, but again this was nothing uncommon for a developing child at his age.
It wasn’t until I took him out of mainstream education and had him privately educated that it was suggested to me to have him assessed. Fortunately it was a simple process, whereby my Doctor had me complete a referral form and he signed it off. Within 6 months (or even less) he was assessed by CAMHs (Children and Adolescents Mental Health Services) and they diagnosed Neziah with Autism and also having Tics (a form of Tourettes).
Being a full-time working mother, routine and structure was always commonplace in our household. Whilst we were not aware of Neziah’s condition at the time, I do suspect that this helped with supporting his needs from very early on.
Neziah manages best when there is routine, structure and order. For example, the first thing he has to do in the morning is have his breakfast, in a specific bowl. As he is getting older, there has been a degree of flexibility where some daily activities can be impromptu, but this usually happens when he’s meeting friends – typical teenager behaviour.
Some of the common traits associated with Autism that Neziah has are:
- Limited/avoiding eye contact
- High sensitivity to smell and taste
- Social communication/interaction and understanding can be difficult
- Lacks empathy in certain circumstances
- Liking a strict daily routine
For many people, if they are not familiar with Special Educational Needs and Disability (SEND) needs or were not expressly told that Neziah was Autistic, they would not be none the wiser.
Neziah is developing as any other 18 year old would, despite the daily challenges his condition often presents. He has always attended Mainstream school and is currently in 6th form doing A Levels/Level 3 CTEC courses.
Being diagnosed with Autism has never stopped Neziah being involved in activities outside the home.
Over the years he has participated in programmes such as:
- Ice skating lessons
- Swimming lessons
- Scouts (Cubs through to Explorers, also having gone on many camping trips including to Sweden)
- Playing Basketball, Rugby, Football clubs (including having the opportunity to volunteer as an Assistant Football Coach for a year)
- Playing sports at school including representing his school for a number of years in the Federation Sports Day
I believe it is important to remember each individual with any additional needs or conditions (and even those without) are different and they should be cared for and supported accordingly.
We all have differing needs whether there is a “label” or name for it or not and in many cases individuals do not like to be singled out or labelled. Differentiation in many cases can be discreet and not overtly highlighting the difficulty the individual is having.
In my experience, patience is required when interacting with individuals with Autism as in many cases, Autistic individuals cannot/do not conform as easily as many of us. Being impatient can just make the situation frustrating for all involved and can often result in meltdowns.
Whilst Neziah did not qualify to have a Statement of Education or EHCP (Education and Health Care Plan), me being very involved in school and communicating with the staff has enabled a very healthy relationship for all.
I think one of the biggest challenges for those who are caring for SEND individuals is the lack of understanding by others. This can include schools, employers (more so the application process), general public and even yourself as a carer.
Not always being able to understand what the individual may want, like or feel can be a challenge and at times exhausting for the carer/family living with the individual. I believe this can be down to the very complex nature of Autism, as they can be very able at some things and not as able in other areas. This can sometimes lead to a false sense of independence as the individual is growing and developing physically as others their age. However it’s the neurological element that has some impairments, not the physical.