As many of you will know we held a survey towards the end of 2013 that highlighted major issues within the diagnosis structure for Autism in the UK.

That survey enabled us to in turn highlight those issues to Westminster and the Department of Health.

Aside from the problem of there being a lack of consistency within diagnosis there was also the disgraceful issue of the time that is taken and often wasted.

A diagnosis can have a MAJOR bearing on how a child is accepted, treated and educated at this time. In taking, all too often, years to complete this process valuable developmental time of that child’s life is being wasted. If we want as many people on the Autistic Spectrum to live the most fulfilling life that is possible across education and hopefully employment, then we need to act as EARLY and as QUICKLY as possible to ensure we set their lives and development prospects on the right setting.

Many schools, services and other education settings do not give the support they could to some children unless a diagnosis is present. This makes it even more important that as soon as the very question of Autism comes up or ANY referral is made that action is taken promptly and within a set timeframe. There should be an automatic ‘flagging’ system that highlights when a child/adult waiting for diagnosis has gone through a certain timeframe which then calls for immediate action. So let’s say as an example if for any person referred a 3 month period passes with nothing being done that is flagged up and possibly triggers direct action. The idea is that a timeframe is not just put in place as a ‘Best Practice’ but is also policed.





It is our aim that when the Department of Health, NHS and NICE are considering the issue of how long a diagnosis can currently take they use the ACTUAL evidence from REAL families.

Previously we presented set figures but now we want to add some of the personal details to highlight to everyone these are REAL situations being faced by REAL families RIGHT NOW. We can only put on the required pressure for change if everyone joins with us.

Attached is a very simple form and all we ask is that when you have five spare minutes you consider completing and sending it back to us.

ALL information provided will be treated with the strictest confidentiality and the only people it will be presented to are those at the Department of Health and within Westminster.

We would like ANY family within recent years that went through a diagnosis process that was LONGER than 6 months or ANY family currently awaiting a diagnosis that has now taken over 6 months or ANY family currently below 6 months but that has been told it will be a year plus before diagnosis to complete this form.

It is not acceptable for any child, adult or family to have to wait the time that some currently are for diagnosis. Together we CAN begin to make a difference. No one else is going to speak up for us so it is time for us to take up the cause ourselves. We do not need ‘officials’ to ask other ‘officials’ what the REAL situation is when we can show them first hand from our own personal experiences what is happening.

If you would like to share your experience on autism diagnosis please email




Written by Austin Hughes