Early autism recognition for the right support

30 August 2017

“Life is a curious thing. Because our daughter contracted a cold and developed a fever, she suffered a febrile seizure at 16 months old. Having this seizure ultimately led to a diagnosis for Rose,” comments Claire Johnson, Rose’s Mum.

Febrile Seizures happen to about 1 in 50 children between 6 months to 5 years old. Rose simply had a common virus and her young body reacted by having febrile convulsions. They are not in themselves harmful and in no way represent any long term issue for Rose. As a direct result of Rose’s seizure, the family were fast tracked down a diagnosis route, which allowed them the opportunity to gain early intervention for Rose’s condition. 

Rose is five years old, an adored elder sister to three year old Mia, cherished daughter of Claire and Si Johnson and one of the most delightful young characters you could hope to meet. Rose also has Global Development Delay and is an Early Years pupil at Portfield School

“Rose is so sunny natured it is really infectious. We are so lucky to have her in our lives. Probably the most difficult thing we have had to do in getting a diagnosis is list all the negative things about Rose’s condition and her subsequent behaviours. There is no opportunity to celebrate your child during the diagnosis process and that’s heart breaking. I don’t think it comes naturally to any parent to focus on all the negatives of your child. It’s un-natural and feels almost disrespectful,” comments Claire Johnson, Rose’s Mum. 

Global Developmental Delay (GDD) is the general term used to describe a condition that occurs during the developmental period of a child between birth and 18 years. It is usually defined by the child being diagnosed with having a lower intellectual functioning than what is perceived as ‘normal’. It is usually accompanied by having significant limitations in communication. It is said to affect about 1-3% of the population.

“I hadn’t heard of Global Development Delay before Rose was diagnosed with it. I understand it to be almost a precursor diagnosis, as Rose has a lot of autism traits. But due to her young age, medical professionals did not want to give a diagnosis of autism.  I hadn’t even been aware of any developmental issues before Rose was 2 years old. At 16 months old Rose had a febrile seizure. It was awful to watch our daughter fitting and shaking and not knowing why it was happening or the potential damage it was doing to our beautiful girl.”

“Luckily, an MRI scan showed no signs of any brain damage, but the Doctors ran some basic tests and noticed Rose’s grip was weak and she didn’t sit up how they expected her to. From this we were referred to the Child Development Centre and things escalated from there. By the time the referral came through it was obvious Rose was then late to walk. She was also non verbal too. So although witnessing our daughter experience a febrile seizure was really scary, it helped us so much with what was to come.”

Claire continues; “Rose is our first born, and now with the benefit of hindsight I can see she did not engage, or connect with me in quite the same way as my younger daughter does. But as a first time Mum I put it down to slower development and wasn’t worried. The seizure marked the start of a new direction for our family, and actually it’s thanks to that we were able to get a diagnosis for Rose whilst she is still so young.”

As a former Special Educational Needs co-ordinator for Primary years Claire knew the importance of having a diagnosis and the difference it would make in being able to get support for Rose. But that didn’t make the process any easier as a parent.

“Even with the professional knowledge I had, diagnosis was a stressful and prolonged process. But that said, it was such an important one for Rose’s future, and for us as a family.

Rose now attends Portfield School as an Early years student and has been at the school for a full academic year. 

“Rose started at Portfield in September 2016, when she was four year old. Rose has come on leaps and bounds since joining Portfield and we cannot thank the staff enough for ensuring Rose follows a curriculum that is specific to her strengths and needs. Within a week of starting school Rose was using PECS and this has opened up a new world of communication. Rose loves school and bounds in every morning and comes out with a big smile every afternoon. The progress she is making is obvious to all.”

Portfield School is now striving to provide a specialist Early Years environment for the youngest members of the school by converting an existing building on site to ensure it offers a much more flexible Early Years appropriate teaching and learning space. 

The whole building is being tailored to meet the needs of the younger members of the school community to maximise appropriate opportunities for indoor and outdoor learning.

Alison Casey, joint Head at Portfield School said “We are striving to provide a welcoming, age-appropriate pathway from nursery to special school. There is an increasing recognition of the importance of early educational interventions to respond to diagnosis of Autism Spectrum Condition (ASC).

“Research shows that early intervention makes a big difference to a child’s development leading to improved outcomes for children with autism, including higher intelligence, and increased social and daily living skills.  We hope to provide for the need arising in placing 4-5 year olds in a specialist environment whilst at the same time improving the outcomes for every unique child on the autism spectrum.”

Ultimately the centre will cater for 16 young learners in two teaching groups, with each class catering for up to 8 pupils at any one time. The initial opening in September 2017, will be for 8 pupils on the ground floor, with a phased approach to developing the upper level of the building in the near future. 

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