August 14, 2018

Autism Diagnosis Survey in the UK – During November 2013 Anna Kennedy Online carried out an online survey asking the thoughts and opinions of both individuals on the Autistic Spectrum and parents and carers who care for someone on the Autistic Spectrum

2000 people completed the “Autism Diagnosis Survey in the UK”. This is the largest UK survey of its kind.

Anna Kennedy Online decided to create the survey and collate answers due to public demand after many parents and carers of autistic children contacted the Charity with issues regarding diagnosis.

One of the key factors expressed by parents on Anna Kennedy Online was the length of time in having to wait to gain a diagnosis with over half the respondents claiming that they had to wait over five years. This is extremely frustrating for parents as they know that early intervention is of vital importance for children on the autistic spectrum.

“In 58% of cases it was the parents who first suspected or had concerns that their child may be on the autism spectrum due to their behaviour or development. In our opinion this clearly illustrates the importance of listening to parents.”

Below are some of the results from the survey

1. In relation to the person/ child who it was first suspected may have an autism spectrum, what was their age?

  • 76% of cases involved a child under 5
  • 16% of cases involved a child aged between 5 and 10
  • 4% of cases involved someone aged between 11 and 20
  • 4% of cases involved adults aged between 21 and 50

2. Having suspected the existence of an autism spectrum condition, at what age did the diagnostic process start?

  • 59% of cases the child concerned was under the age of 5
  • 30% of cases the child concerned was aged between 5 and 10
  • 9% of cases the person concerned was aged between 11 and 20
  • 2% of cases concerned adults aged between 21 and 50

Anna Kennedy Online states that

“The process in place for diagnosing children and young adults is not fit for purpose and requires immediate improvement. Parents who manage to negotiate the energy sapping bureaucracy often find that the service provided is disconnected and in many cases is of unacceptable quality.”

Parents’ views about the diagnostic process were also expressed and included in the report. One parent carer states that:

“We knew Emily was autistic from when she was 2. We were involved with lots of professionals yet none were prepared to diagnose. She was eventually diagnosed at 9 with Autism and learning difficulties. The waiting list for assessment for Autism was horrendous so we said we thought she had ADHD. The list was shorter. She was assessed and they said no to ADHD but yes to Autism. 7 whole years of utter frustration and schooling that didn’t work for her as a result.”

Anna Kennedy
Anna Kennedy OBE

Anna Kennedy said:

“This survey demonstrates that the process in place for diagnosing children and young adults is not within many local authorities fit for purpose. Even parents who manage to negotiate the bureaucracy often find that the service provided is disconnected and of poor quality”

Anna Kennedy makes it very clear that the Government need to start listening to parents as they are on the frontline, their concerns have been raised in the past but nothing seems to happen.

“My research is based on speaking to the people who matter namely the parents of children and young adults affected by Autism concerns have been raised in the past but nothing seems to happen.”

Anna Kennedy also adds:

“The challenge to the government is to sort this out and let parents know when this will be done. After all if it’s not the Governments job whose job is it?”

You can read the full Autism Diagnostic Survey here

About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo tweets (@mummyworgan) and is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.

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