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Right from the Start toolkit
Research
Thursday 20 February 2020

Thousands of parents facing ‘nightmare’ waits for diagnosis and support

From their child first being referred for an autism assessment, nearly half (46%)* of parents waited longer than 18 months for a formal diagnosis. In some cases, parents reported waiting over 3 years. 

Parents are also struggling with a lack of support after an autism diagnosis – with over 70%* saying the support they received wasn’t good enough. In many cases parents reported being left “completely alone” without a follow up appointment or signposts to sources of support, for example, speech and language therapy. 

To support parents, the charity Ambitious about Autism has launched a brand new 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. 

Key topics include information on child development, strategies to help children, how to request an autism assessment and navigate the diagnosis process and also information about the financial, educational and emotional support available for autistic children and their families. 

Jolanta Lasota, Chief Executive of Ambitious about Autism: 

“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. 

“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 Right from the Start toolkit directly for parents to empower them with knowledge about how to support their children in their crucial early years.

“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.” 

Parent Helen from Kent has been involved in the development of the toolkit with Ambitious about Autism. She spent two years waiting for diagnosis for her son Evan, now four. 

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.”

Helen says receiving the diagnosis finally gave her the confidence to seek support in the community, and further her understanding of her son. Until then she worried it was ‘all in her head’.

She said: “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” 

Ambitious about Autism’s new online toolkit is available to download here. 
 

*Data from online survey conducted by Ambitious about Autism between September 2019 and November 2019. The survey was open to parents and carers of autistic children aged 0-25. 3,842 people responded to the survey.

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