A few months ago, we ran a story about the development of a new toolkit called for #RightFromTheStart to assist schools to recognise and help children with autism. I was on the Expert Reference Group that helped to put the kit together and many of you also responded to a survey asking for your views that helped inform the resource. The toolkit is the work of the charity, Ambitious About Autism.
Today it's been published, and we're delighted to tell you all about it. Here's Ian Sutton, Right from the Start Programme Manager at Ambitious About Autism to explain.
Right from the Start: An ambitious toolkit to help schools help autistic children by Ian Sutton, Ambitious About Autism
All every parent wants for their child is that they can have the best possible start in life. For autistic children this means identifying their needs as soon as possible and making sure they have the support they need to thrive in education and beyond.
For many parents, securing an autism diagnosis is a crucial way to unlock further help and support. Today, the charity Ambitious about Autism has released new research highlighting the barriers many families face trying to get crucial early support for their children.
An online survey of nearly 4,000 parents conducted by the charity last Autumn has found that nearly half (46%) are waiting 18 months or longer for their child to be formally diagnosed. Also worryingly, over 70% said they weren’t offered adequate support for their child even after receiving a formal diagnosis.
“Many parents say they feel isolated and helpless as they wait for to find out if their child has autism. To make matters worse, our research tells us that even when families receive an autism diagnosis, they continue to struggle to access adequate help to understand and support their child’s needs and help them feel positive about the future.”
Jolanta Lasota, Chief Executive, Ambitious About Autism
Left to cope alone
Parents told Ambitious about Autism that they had been left “completely alone” without a follow-up appointment or signposts to sources of support, such as speech and language therapy. In some cases, parents reported waiting over three years for an autism diagnosis.
Parent, Helen Harland, from Kent, waited two years for an autism diagnosis for her son Evan. She said: “I didn’t think I could go to the GP with concerns about my son's development. I lived this life day in day out, worrying he might have something like brain cancer, or wondering if I was just a bad mum, and not knowing how to help him. Having a resource that shows parents what to look out for and how they can raise their concerns is really important. It’s also important parents know where to look for support and what their rights are”
For several months, Ambitious about Autism has been working with parents and a range of autism and early years professionals – including Special Needs Jungle – to develop this new resource for parents aimed at increasing help and support in the early years. And today we've launched the online toolkit designed to help parents navigate their autism journey in the early years. The free, comprehensive guide contains a wealth of information, practical tips and checklists to empower parents with the knowledge to support their children, their families and themselves.
Toolkit answers common questions about autism
The guide has been developed to address pressing issues where parents said they want more guidance and support. From understanding and recording their child’s developmental milestones, to comprehensive information about the diagnosis process – the toolkit covers a range of useful topics aimed at answering common questions and providing help in one place.
Jolanta Lasota explained: “Every child and family’s journey is different but we hope this free resource will reassure parents that they are not on their own; and give them more confidence to speak to professionals about their concerns to access the support they may need. Autistic children have so much potential but we know that the earlier they can benefit from the right support and interventions, the easier it is for them to thrive and achieve as they grow up. We’ve created our new toolkit directly for parents to empower them with knowledge about how to support their children in their crucial early years.”
Ambitious about Autism’s new online toolkit is available to download here:
Also read:
- Help get support right from the start for autistic children
- Improving autism training in schools: A good practice example.
- Autism in Pink: Helping to identify undiagnosed girls with ASD
- Autism and Anxiety: What helps?
- Holly’s autism film starring role helped raise her classmates’ awareness
- Why sharing best practice in autism benefits everyone
- Hidden isolation: When autism can make leaving the house impossible
- How do people with autism experience empathy?
- Why there’s a bright future using ‘Guiding’ for children with autism
- I chose mental health over a prestigious Sixth-Form, that refused to recognise my autism
- Ambitious about an education: A young autistic woman’s experience
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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