Anna Kennedy Online published survey results this week about parents, carers and autistic individuals' viewpoints in gaining a diagnosis and subsequent services. Over 2,000 people completed the survey making it the UK's largest survey regarding Autism diagnosis.
I myself completed the survey which was posted across various social media sites.
One of the key findings from the survey was the length of time many parents and carers had to wait in gaining a diagnosis; over half the recipients had to wait over five years. This is disgraceful. Early intervention as we all know is absolutely vital in giving these children the absolute best start in life. By delaying the diagnostic process these chances are diminished.
I have to point out that I am one of the lucky ones who gained a relatively quick diagnosis, my son was given a diagnosis of Autistic Spectrum Disorder (ASD) at the age of 3 1/2, and he was first referred at the age of 2. I am painfully aware though that i am in the minority, my experience is most definitely the exception and not the norm.
Anna Kennedy Online states in its findings
"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."
Yes professionals should listen to parents but I feel that our opinions and views are usually the last to be heard. This was my experience in gaining access to an appropriate school for Tom. I felt that my concerns were not properly addressed, but again that is a different story.
I have many friends who have had to literally fight, and some are still fighting to gain a diagnosis for their child. What I found most upsetting from the survey results was that 30% of respondents concerned children between the ages of 5 and 10 who were still waiting to gain a diagnosis. What happens to these children? What support and interventions do they receive if any while stuck in the system?
I am not so naive as to say that a diagnosis solves everything, but what it does do is open doors to funding, help and support. It is not as many people have told me a 'label'. Having a diagnosis of ASD for my son has been a 'signpost' that has allowed us to access services, gain a statement of educational needs and access to an ASD specific school. Diagnosis is important, for both the child and family.
"Our 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 Online
There is also the question of where do you go to access help and start the whole diagnostic process? I was very fortunate in that my son attended a nursery within a children's centre when concerns regarding his development were raised and so therefore we received lots of hands on help as well as being referred to the local child development centre. This is not the case fur many parents. They have nowhere to turn to, nobody to ask for help. This was reinforced in the survey results.
"71% of participants shared that it was not easy to find vital information as to how to obtain a diagnosis nor in many cases was it explained where a diagnosis could be obtained."
There needs to be better information sharing between professionals, services and parents. Parents need to be part of the diagnostic process, they must be listened to.
Anna Kennedy Online also found that there is not one diagnostic tool used but several. The NHS should use the ICD-10 diagnostic tool but many professionals within the NHS are using the DSM-V diagnostic tool. It would therefore appear that there is no continuity between professionals with children often not being diagnosed
"We now have evidence of families being told 'ah we would have given you a diagnosis before but under DSM-V 'Asperger's' no longer exists and as your child's symptoms meet with what we view as Asperger's we can no longer diagnose'."
It is extremely obvious that there needs to be a dramatic change within the whole diagnostic process on so many levels. Parents need to be listened to and involved more within the process, there needs to be unity between professionals and a clearer diagnostic tool.
I think it is also important to remember that ASD as its name suggests is a spectrum condition and children will present in a variety of different ways. My son for example will not classically line things up, he prefers chaos theory.
Perhaps now the Government will listen and take action. It needs to ask itself why so many young children are being failed? Why are they falling between the cracks when it comes to gaining a diagnosis?
The way our children are diagnosed and supported needs to drastically change.
The full Autism Diagnosis Survey survey results can be read here