Last week, I attended the first meeting for a new Reference Group "Right from the Start" established by the charity, Ambitious About Autism, the national charity for children and young people with autism. Its purpose is to advise on the strategic development of a new programme called, Right from the Start, aimed at improving the experiences of families of children under five years old with autism.
Although we know that the earlier children are supported, the better the outcome, unless a child has very obvious and severe symptoms before they get to school, their autism often goes overlooked by practitioners who are not trained to spot the signs. Parents who, like I did, notice there is something amiss at a young age, can be dismissed, or thought of as fussy, or just plain bad parents. And I'm sad to say that even almost 15 years after we were told, 'your child is autistic, goodbye!' things haven't much changed for far too many families.
This major programme's members include other children's charities, the DfE, Ofsted, national NHS and medical professional bodies, and special education leaders. I’m so pleased that SNJ is also included to help bring about this vital change, AND you can help too.
Alison Worsley, the charity's Director of External Affairs, is here today to tell us how you can very easily do just that.
Getting it right from the start for children with autism
by Alison Worsley, Ambitious About Autism
It is a well-proven fact that early intervention – receiving the right support as early as possible – is crucial to securing the welfare and happiness of children.
Sadly we know that for too many families of children with autism this vital early support can be patchy, delayed or missing altogether. First of all, it is taking far too long for families to receive an autism diagnosis. For some families this can be as much as four years from the time they first note a concern. But once they have this often extremely hard-fought for diagnosis, what happens then?
Initial feelings of relief post-diagnosis can quickly give way to confusion, as families attempt to navigate their way towards an understanding of autism, what it means for their child, and what support is out there to help.
All any parent or carer wants for their child is for them to be happy and supported to achieve their potential. For families of children with autism, knowledge is power. Unfortunately, research tells us these families are being badly let down. Almost half receive no follow-up appointment post-diagnosis, while only a third are signposted to further advice or help. Parents are being left lost in a diagnosis and support system that is fragmented and confusing – and the result means children are struggling to get the help they need at a crucial stage in their lives.
How you can help too by lending your knowledge
Ambitious about Autism - is working on an exciting new project aiming to equip families with that knowledge. Over the next year we will be gathering an evidence base to inform a parent-friendly and accessible information pack to help parents feel better informed and supported during the time it takes to get an assessment and during the challenging period following a diagnosis.
To help us create this new resource, we first need to understand the experience of families of young children with an autism diagnosis, or suspected diagnosis – to identify the gaps in access to early years support.
If you are a parent/carer of a child aged 0-6 years old with a diagnosis or suspected diagnosis of autism, please help us completing our survey and sharing your experience.
The survey is available in two versions listed below:
- Online version: this can be completed and submitted online.
- Paper version: this can be requested online via the form or by sending your details and address to firstname.lastname@example.org or call the research team on 024 7657 5866.
We want all children and young people with autism to have best possible chance to learn, thrive and achieve. We hope this practical resource will reassure and support parents at a crucial moment in their children’s lives. Thank you for helping us with this important project.
Tania’s note: It's important to get the views of as broad a cross-section of families as possible. If you are a teacher or other education, health or social care practitioner, please take a moment to pass this on to the families of ALL autistic children you work with. It's my experience that parents really want to share what they know to help others, whatever their own background, but they may miss these opportunities to do so, or lack confidence to share their knowledge. So please help give them the chance to do this and send this survey to them, or order some printed versions you can offer. The links again: Take the online survey – click here OR Request a printed survey – click here
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She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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