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On Monday 1 April, a panel of autism experts and advocates attended the second session of the inquiry into the Autism Act: a law which is celebrating its tenth anniversary this year. We asked James Sinclair, author of the Autistic & Unapologetic blog, to tell us what happened:

 

The Autism Act states that, at all times, there has to be a strategy for improving services for autistic adults and that this Act must be underpinned by legally binding guidance. It was the panel’s decision to determine what success this had seen and what still needs to be done to improve the public’s understanding of autism.

With Dame Cheryl Gillan MP chairing the session and Tom Purser (National Autistic Society), Jane Howson (Autism Alliance), Helen Ellis (self-advocate) & Gill Wilson (Channel 4) on the panel, the session was split into two sections where witnesses, invited from around the autism community, shared their experiences of awareness and understanding of autism. The panel then asked the witnesses questions on how necessary improvements could be made for autistic lives.

Amongst the witnesses, there was a brilliant cross-section of the entire autism community, parents of autistic children, creatives, diversity advocates and employers, there to examine the progress that had been made, and what is still left to do to create a world that works for autistic people.

When questioning began, conflict within the panel erupted almost immediately, as a debate regarding a North/South divide in autism support services was brought up as well as the postcode lottery of services around the country. This dispute was only quashed, when witnesses were asked how to ensure all autistic people, including those with complex needs or those who are non-verbal, can be represented.

This conversation which followed confirmed the challenges which can exist when trying to represent the entirety of a community as diverse as the autism spectrum. However, the agreed belief was that there is a lot more currently being done for raising awareness of less able autistic people and children, than there is for adults on the spectrum. Because, as self-advocate Penny Andrews stated, children have the ‘cute’ factor.

Jane Howson, who has experience of working on shows like the Autistic Gardener and Are you Autistic?, developed on this by stating that the media can be an important tool when trying to bring representation of the entire spectrum to the public. However, in a similar way to people paying closer attention to autistic children than autistic adults, most audiences and producers want to see characters with savant syndrome (like Rainman/Sheldon Cooper) as they are much more marketable – despite being extremely rare.

Peter Bowker, writer of the A-Word agreed with this, but said that, in examples like his own show, there appears to be a case for improvement being made – although he did acknowledge the challenges he had experienced in getting the show off the ground in the first place.

This led to a wider conversation around how difficult it can be for people to change the public’s behaviour, when its benefits do not impact them. Dame Cheryl Gillan summed this up at the end of the first half by stating:

the simple, yet somehow impossible, solution to increasing autism understanding is for people to just be ‘decent to each other’.

As, instead, it is currently up to the autism community to push the heavy boulder of understanding up the hill on our own.

After a short break, the discussion of ‘What role can autistic people play in improving society’s understanding of autism?’ was posed by the panel. This question also became a point of contention, with some of the witnesses holding the belief that autistic people themselves shouldn’t have to try harder to make their experiences understood – as it is the public themselves who need to start demonstrating a willingness to listen and adapt for those who need the support.

The panel argued that while this may be true for the public, autistic people shouldn’t stop trying to make their voices heard - as businesses are certainly listening and reliant on this information when they try to implement changes that make their organisation more accessible.

The suggestion of an awareness and understanding programme was then raised: a programme which encourages people to learn more about autism in their community so that they can take action and support autistic people. Some witnesses did not believe they would have challenges if the public understood autism properly.

One alternative to this idea was to make autism training in schools mandatory, not just for staff, but also for children. This suggestion received room wide approval as it would mean that the newer generations would grow up with the understanding most members of public currently lack. We heard that autistic children are more likely to be excluded than their peers without a special educational need, even though excluding autistic pupils because of their autism is now illegal.

Following on from here, the question ‘What else can the state do to support understanding of autism?’ was asked. Panelists and witnesses responded with the proclamation that industries need to have the autism protection policies enforced as this will stop the current attitude of treating said policies as guidelines which can be ignored or adhered to on a whim.

Accountability was seen as a huge issue, as current laws have not been enforced in recent years.

For the final question the panel was then asked ‘How will we be able to measure autism understanding & know when we are successful?’ However, we had run out of time and all the panelists and witnesses will continue to think about how to measure this success.

In her closing statement Dame Cheryl Gillan, stated that "more MPs need education on autism before a real difference can be made, while organisations need to pledge to also make the jump between raising awareness of autism and raising understanding of the condition."

 

You can help build public understanding of autism by inviting your MP to attend our first ever understanding autism workshop for Members of Parliament here.

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