This year is the 10th anniversary of the Autism Act. This was a landmark in the battle to improve the lives of autistic adults and their families in England. In this blog, Robyn Steward, an autism consultant, author and ambassador for our charity, looks back on the campaign for the Autism Act and considers what still needs to change.

It was an honour to be involved in the campaign that led to the Autism Act 10 years ago. I met so many brilliant autistic people during this time, working with their families, the National Autistic Society and many other autism charities, as well as some brilliant MPs like Cheryl Gillan.

It was wonderful speaking at an event in the House of Commons, launching the Autism Bill, which became the Autism Act. Having spent a lot of my life up till that point quite powerless (I was 22 at the time) I was so glad to be making a difference. I remember the carpet was very busy and green. Lots of people listened to me and the other speakers.

What the Autism Act means to me

In my speech, I talked about my school and college experiences where people spat in condoms and threw them at me and called me spastic and a retard. I grew up in Suffolk and could not go anywhere independently. Although I got my diagnosis when I was 11 it didn’t make much difference because people did not have a lot of information about autism. So I was excited that the Autism Act would make a difference to people like me.

What's changed

That was 10 years ago and things have changed – but I think it’s important to be aware of how policy works. Policy is like the breeze blocks of a house, which the rest of a house is built upon. When the house is built you can no longer see the breeze blocks but they are still very important.

I remember that I was especially excited that the Act would make it the law for local authorities to provide training for people who are ‘customer facing’ – as well as specialist training for social workers doing assessments.

The reason this excited me so much is that I’d seen the difference training can make to a college environment – when it was put in place and delivered by autistic students. It really helped staff to understand autism and therefore improved how they interacted with autistic students.

The Act isn't perfect

The biggest problem with the Act is that there is little accountability on local implementation. This means that there is no consequence for local authorities if they do not meet the Act – unless you want to take them to court, which is a big step and you might not be successful. Some local authorities, for example, want trainers such as myself to deliver what should be a full-day of training into a half-day – or for it to be done online. I feel that this is not the best way of educating people who have to interact with autistic people on the ground. Also, not all training involves actually autistic people.

Although there is a survey about Autism Act implementation that the Government asks councils to fill out once every couple of years, it is often not reflective of what really happens. When I was on the national autism programme board I went to an event in the north of England with about 80 people and they told me that the numbers in the survey for the most part didn’t reflect what was really happening. I think it would be better to have independent organisations auditing local authorities.

There are good examples of how well things can work. For example, Midlands Psychology took over a diagnostic service and managed to cut diagnostic waiting times dramatically, even winning an Autism Professionals Award for their work in 2014. But, while the Government has shared some good examples like this, the information is often not simple and plain and on one page so decision makers can learn from it and apply it in their area.

But it proves positive change can happen.

Campaign for change

The Government are reviewing the impact of the Autism Act and its strategy this year. For the first time it has pledged to extend the strategy to children. This is an opportunity to push for positive changes for autistic people and the National Autistic Society will be campaigning throughout the year.

The charity wants to hear about autistic people’s experiences of autism services and support so they can show the Government where things are going wrong. Please take their survey and help get the Government to improve support for autistic people.

Conclusion

The Autism Act was a huge achievement that gave autism a profile and law to make the world better for autistic people. However, there needs some force applied to make sure it actually happens.

 

Robyn Steward is an autism consultant and also Autistic Ambassador for the National Autistic Society. Find out more about Robyn’s work on her website.

Take our survey here