Autism in the UK

In the UK (at least in the year 2003 which is when our child was diagnosed) a diagnosis of ASD is given following an assessment. It works like this:

New parents have a Health Visitor sent out to check on the health of their baby at periodic intervals for the first few years following birth. This is not checking up on you as much as trying to make sure milestones are hit when they should be.

At some point before 36 months, the Health Visitor must have sufficient concerns to make a referral to two sets of people. The first is the Local Education Authority (LEA). More on them shortly. The second is the Local Health Authority (LHA). These are the people who will assess your child.

The assessment itself lasts for up to two weeks and essentially takes the form of a per-school playgroup. There are games, arts and crafts, singalongs etc. However, these are each carefully crafted to assess the triad of differences. At various point during the two weeks, experts in particular fields (mobility, seizures, language etc) will come on for half a day to observe as the nursing staff "play" with the kids.

Each of these experts makes a formal report and the nursing staff make supporting observations. At that point (the end of the two weeks), the autism specialist consultant will make a diagnosis and invite the parents back to share the diagnosis with them.

I mentioned the LEA earlier. At this point, the LHA pass their diagnosis onto the LEA who make their own assessment. The results of this are formal and are the start of what is usually a pitched battle between parent and LEA. Educational services in the UK take two forms. Public schooling provided by the LEA. Private schooling paid for by the parents. The LEA will push for public as it is cheapest. There is also the option to Homeschool, which we do. We do not this out of choice but necessity. There is no suitable education for our child. In fact, in the UK there are twice as many autistic school age pupils as there are autistic specialist places. That is accounting for both public and private.

The problem of recognizing autistic adults in the UK is massive. There is little to no official counting going on. Therefore LEA's find it easy to avoid creating autism support for University students.

As far as I know there is little to no public housing support at a national level for autistic adults. I have approached several Housing Authorities for this piece and received no data from them.

By contrast, I believe that--although it is certainly flawed--the largest (and oldest) UK autism organization, the National Autistic Society, frequently and increasingly has a good and autistic friendly attitude. It pushes for adult services, it recognizes that searching for a cure is not the chief concern of most of its membership and has several autistic individuals in key positions of responsibility. In my day to day life as I meet people curious about autism it is rare to meet people who are completely without a recognition that "nothing about us without us" is a good idea for autism. Most people recognize that it should not be necessary to change someone in order to make them accommodate. The UK is traditionally a nation of individuals and we respect idiosyncrasy and individuality. I believe this leads to a tolerant and patient attitude in most. But far from all.

In the UK, the biggest challenge (I believe) facing autistic people is two-fold. Firstly, there is currently a lack of political will to recognize that education and support for autistic people is not good enough. For kids it is patchy and sporadic and the quality depends almost entirely on where you live. For adults it is almost non-existent. Secondly is the need for quality science based research to establish once and for all the true autistic population of each county and the country as a whole. Only until this is known can we start to plan and supply the key services and support networks that autistic people may require.