Raising Awareness of iss facing those with autism from Black and Ethnic Minority (BME) Communities

Campaigning is a crucial part of raising awareness. Being on the spectrum or being the carer of someone on the spectrum is an experience that most people find difficult to comprehend. Therefore as difficult as it may be, we need to be the driving force behind campaigns that highlight autism and how it affects everyone around us.

On 12 February, the NAS, with the support of Diane Abbot, MP, launched a new project to raise awareness of the specific issues facing those with autism from Black and Ethnic Minority (BME) Communities. This was a one of a kind event which had a fantastic turnout and achieved attendance from MPs and Peers from across the political spectrum.

So why have a BME specific campaign?

In a report by NAS (Missing out, 2007) it found that 24% of BME children had been excluded from schools, while 78% said their local authority did not provide support to their children during exclusion and more than half of parents from ethnic minorities whose children have autism did not have a choice of school. BME parents were also “significantly” less satisfied with their child’s academic and social progress compared to their white counterparts. This painted a stark picture of access to educational services within the BME autism community.

Seven years on and these issues are still pertinent; more so, given that resources are rapidly declining and unfortunately those who demand services are more likely to gain access to them.

There are clear issues which highlight the plight of many people with autism within the BME community. Firstly, evidence about the prevalence of autism in various communities and its impact on family life is inconsistent. Evidence has highlighted that communities may not be aware of autism, their rights and relevant services. Finally, services that are available do not always meet the needs of these families.

For me personally, I have never thought about the link between ethnicity and disability and how a substantial amount of the autism community is currently facing double discrimination. I suppose this is more of a reflection of how insular the fight becomes for you on a daily basis that you lose sight of the bigger picture. Going to the event, was an opportunity for me to think about the greater impact current changes are, and most certainly will be, having on all of us. If members within our community are not able to access even the most basic help with regards to finding much needed support then we clearly are failing in our own roles as advocates and champions. I hope this event is one of many that will pave the way for highlighting this issue more and make accessibility to information that little bit easier.

I am delighted that we were able to get a substantial presence for autism within parliament and I am extremely hopeful that it will provide some much needed support to our fringe members who do on a daily basis feel even more marginalised.

Ambassadors help us celebrate 50th Birthday

To mark our 50th birthday, we commissioned the largest ever survey into autism, in order to show what life is like in the UK for people affected by the condition. Over 8,000 people, including many ambassadors and champions from the AAN, were among those who took part.

You can now read the full report, ‘The Way We Are: Autism in 2012’, online. 

Some of it does make for difficult reading but for all the troubling experiences there are also many stories of hope and courage.

Covering the wide range of autism experiences from diagnosis and employment to school and independent living, the report shows that whilst there have been enormous strides in autism awareness since the NAS started life in 1962, there is still work to do.

Ambassadors Sam, Gabriel and Ben were among many Ambassadors interviewed for the report. 

We were also really grateful to Daniel, Jennifer, Basil and Mark who were involved in a focus group many months ago to help with messaging for the 50th

Many, many thanks to all who took part in the research and got in touch to share their experiences with us. 

End the care crisis lobby

On 6 March, Ambassadors joined thousands of campaigners from across the disability sector for a mass lobby as we demanded the Government take action to fix our underfunded social care system. 

It was a fantastic opportunity to talk about the issues directly with MPs and show how strongly we want change sooner rather than later. 

As well as meeting their MPs, Ambassadors wrote questions for a live Q&A with Paul Burstow, the Minister responsible for this area.   They were also part of the first ever Twobby (online lobby) – which enabled hundred more campaigners who couldn’t attend to still ask questions and tell their story.  As you’ll see from the video our Ambassadors were at the forefront of the photo shoot outside of Parliament which was used for successful media coverage of day. 

Thank you so much to all those who took part in the lobby and if you’ve been writing to your MP in the meantime.  If you want to get invovled then you can do so here. 



Being involved locally

I have a fantastic brother Indi who is 17. We are at the cusp of transition and like many fellow parents, siblings and carers; it is a very confusing and challenging journey. Two key areas that the Autism Strategy looks into is improving access to the services and support people need to live independently within their community and enabling local partners to develop relevant services to meet identified needs and priorities in their local area.

So when I set out to find out what was happening in Croydon with regards to implementing the Autism Strategy, I was at a bit of a loss as to where to start. I began by approaching the local Learning Disability Team. This did not bear much to fruition, as they did not know anything about the Strategy and where the Council was with regards to implementing it. I tried calling various departments in the Borough to no avail.

Getting nowhere, I approached local forums to see if there was anything happening at a grassroots level that I had not been aware of. I approached the local Parents In Partnership Forum and got in touch with the Carer's Forum. The forums have been immensely helpful in getting an idea of what is going on within the local area in general, regarding, accessibility to services. I was able to actually network with people more in the know and feel supported. That feeling of being supported is crucial especially when you don't know if you are the only one trying. I was able to get details of the Learning Disability Partnership from a member within the forums and am now waiting to hear back from someone in the Council regarding exactly where they are.

I know this is a very long-winded way to go about it perhaps. However, given that I was not getting anywhere on my own, I preferred this route of joining up with local forums simply because there's always strength in numbers, especially if the end goal for all of us is a similar result, i.e., better access to services and lobbying for services not currently available for our young people.

Sam