There was lots going on during World Autism Awareness Week. MPs debated the need for greater understanding of autism in a well-attended debate and we met with Government officials to talk about getting more autistic people into work.

On the first day of World Autism Awareness Week, we went to a meeting with the Minister of State for Care, Caroline Dinenage MP, who oversees the adult autism strategy in England. The meeting was the first new ‘annual accountability meeting’ to see what progress is being made on the strategy and where needs more improvement. You can read more about this meeting and how the Government oversees the strategy here. It was attended by some autistic people, carers, charities, Government officials and people from several professional organisations.

Not only was this the first of these meetings, it was also the Minister’s first meeting with lots of us. So it was an opportunity to raise the things that autistic people have told us are really important.

The Minister wanted to reflect on what she had been told by us and others in the meeting. In this blog, Caroline Dinenage writes about what she will be focusing on as Minister and why World Autism Awareness Week is important:

During World Autism Awareness Week, we were all able to reflect on what more can be to done to make autistic people’s lives easier.

As the Minister of State for Care, it is my responsibility to oversee one of the most important aspects of the law for autistic people – the Autism Act and adult autism strategy – on behalf of the Government.

Last Monday, I was delighted to chair the first ever autism accountability meeting under our new governance model for our Think Autism strategy. The opportunity to receive the input and advice of such a broad range of stakeholders - including experts, colleagues from the third sector, other government departments, autistic adults and family carers - is a significant step forward. 

I was immensely grateful for the high quality of discussion, particularly the powerful insight offered by self-advocates and family carers, on their lived experience of autism in this country.

This highlighted to me the severe challenges that autistic adults and their families face, and the significant scope for improvement in support and care. 

Their often heart-wrenching stories for me cemented my commitment to build on the progress we have already made.

Almost every council (93%) now has an autism lead and 65% of local councils include autism in their joint strategic needs assessments, hard-wiring discussions about autism into the fabric of local government decision-making.

Within Whitehall, the Department for Education has also introduced the biggest reforms to special educational needs support in a generation – putting families at the heart of the system with new Education, Health and Care plans that are tailored to meet the needs of children and young people.

And constructive partnerships with other parts of civic society is starting to change the conversation around autism – from arts organisations offering autism-friendly performances through to bus drivers now having to undertake mandatory training to understand learning disabilities, this is making tangible differences to people’s daily lives.

Underpinning all of this is greater accountability and transparency, with new autism indicators now included in the Mental Health Services Dataset (MHSDS).

It is a real step forwards, for we need robust, comparable data like this to be regularly collected and monitored so that we can be certain of the true extent of problems, not just on waiting times for diagnosis, but also on post-diagnostic outcomes.

But we know more needs to be done. 

We have heard that all too often the NICE recommended wait from referral to assessment is exceeded.  There is a disparity between male and female diagnosis and many families describe the transition between children’s and adult’s services as like ‘falling off a cliff edge’.

The complexity of autism, and the multi-faceted nature of the needs of those on the spectrum, poses further challenges.

Because the needs of each individual can be so different, it’s not a case of a ‘one size fits all’ kind of approach to the support services local areas provide.

This often leads to regional disparities not only in autism diagnosis waiting times but in the services someone can access once they have a diagnosis.  

And while some areas are doing well in terms of what they offer, it is fair to say that others are not doing as well as they should be – so we need to ensure that good practice is identified and shared across all areas. It is essential that the practice of the best becomes the practice of all. 

Most important of all is continuing the long process of educating and inspiring people to think differently across our society. 

Research from the National Autistic Society has found that although 99.5% of people have now heard of autism, very few people really understand what it means to be autistic, the difficulties that people on the autism spectrum can face – and, of course, their strengths and the amazing contributions they can make.

And this, above all else, is what World Autism Awareness Week is about – celebrating the 700,000 autistic people in the UK, and inviting everyone to take a few minutes out of their day to understand them a little better. 

If we can all do this, then I am sure we can make an even bigger difference in the years ahead.


Caroline Dinenage MP, Minister of State for Care