23rd July 2021 • My Family Our Needs

The Government has launched a new multi-million pound strategy to speed up diagnosis and improve support and care for autistic people.

Backed by nearly £75m in the first year, the funding includes £40m through the NHS Long Term Plan to improve capacity in crisis services and to support children with complex needs in inpatient care.

The autism strategy, which will run until 2026, has been developed with the views and experiences of autistic people provided in response to the Government’s call for evidence in 2019.

Key aims of the new strategy:

  • Improve understanding and acceptance of autism within society: Developing and testing an initiative to improve the public’s understanding of autistic people – both the strengths and positives as well as the challenges, working with autistic people, their families and the voluntary sector. This will help people recognise the diversity of the autistic community; that every autistic person is different. It includes improving understanding of the strengths and positives of being autistic, as well as the challenges people might face in their daily lives and how distressed behaviour can manifest itself.
  • Strengthen access to education and support positive transitions into adulthood: Testing and expanding a school-based identification programme based on a pilot in Bradford from 10 to over 100 schools over the next three years. Early findings from the pilot show children are being identified earlier and getting support quicker.
  • Support more autistic people into employment: Improving the accessibility of job centres for autistic people, to get them the right help to find jobs or employment programmes.
  • Tackle health and care inequalities: Providing £13m of funding to reduce diagnosis waiting times and increase availability of post-diagnostic support for children and adults, and address backlogs of people waiting made worse by the COVID-19 pandemic.
  • Build the right support in the community and supporting people in inpatient care: Providing £40m as part of the NHS Long Term Plan to improve community support and prevent avoidable admissions of autistic people and those with a learning disability, and £18.5m to prevent crises and improve the quality of inpatient mental health settings.
  • Improve support within the criminal and youth justice systems: Reviewing findings from the Call for Evidence on neurodiversity and developing a toolkit to educate frontline staff about this, and the additional support people might need.

Our columnists’ thoughts

We were really keen to find out what our regular columnists, Aoife Casson and Carly Jones MBE, thought about the new strategy and MFON got in touch to find out their reactions.

Carly and her autistic girl power t-shirt

Carly Jones MBE first became aware of the vast in-depth work carried out towards shaping the autism strategy in 2019 when a national charity, who were sending in briefs for the consultation, asked Carly to work as a reviewer on the materials they were submitting for the autism strategy about autistic women and girls.

Reflecting on the work that went into the strategy, Carly Jones MBE said, ‘Often, when I present keynotes or training aimed at parents, I start with the openers of “If you are currently worried about your child’s diagnosis then please know that there has never been a better decade for an autistic child to be born into. The awareness we have now in 2021 is light years away from the awareness we had even ten years ago. Awareness isn’t enough though; equality and, more importantly, equity for Autistic people young and old has to occur with everyone singing off the same hymn sheet for strategies to work. My good friend, Melanie Bryan OBE DL, has an autistic grandson and she somehow manages to juggle her extensive work commitments with her selfless and unwavering support for him, and fight for his rights to an accessible education.

She wrote to me: ‘Let’s hope this truly makes a difference. As proud Nana to an 11 year old awesome autistic grandson, I experience most days just how deficient our systems are (e.g. getting the right educational setting and support to learn), how inaccessible venues and public spaces are, and disabling attitudes can be (albeit many people are wonderful).  Having the right strategy is essential, but it’s also vital that this is consistently implemented with simple and speedy remedies for families when this doesn’t happen in practice.’

Melanie is right; things do need to change.

We haven’t come this far to only get this far.

The autism strategy is an exciting opportunity to safeguard as many autistic people as possible in the justice system, whether they they defendants, witness, victims or MoJ members of staff. The strategy, in unison with the Oliver McGowan Mandatory training of autism and learning disabilities for all NHS staff, can make changes to the life expectancy of autistic people. We currently have a life expectancy of an unjustifiable 39 years of age if we also have learning disabilities, and a mere 57 years of age without learning disabilities. Where I live in Berkshire, we have the longest waiting list for a diagnosis in the UK. The average is over two years. As someone who was diagnosed at 32, I know how each day, week, month, decade, without a diagnosis and support affects the rest of your life dramatically.

My sincere plea is that the diagnosis waiting game is finally taken seriously and seen as the huge health crisis it is. I hope, with very atom of my being, that autistic people in residential settings are moved closer to home or, even better, supported within their family home and treated with the respect and kindness they so thoroughly deserve.

I know if we as individuals, Government departments, advocates, charities, parents, carers, and organisations use this strategy as a bible we can all agree on, we can make 2026 onwards an even better decade to be born autistic. As an autistic woman and parent of autistic daughters; I love autistic people. Love can be a noun or a verb; it can be something we say, it can also be something we do.

We can’t just say we will change things, let’s roll our sleeves up too.

Aoife Casson talks anxiety

Aoife Casson, MFON columnist, who was diagnosed with Asperger’s Syndrome, said, ‘It feels great to know that the Government is finally investing in the underserved and misunderstood autistic community. Too often, those in power make decisions for the autistic community without consulting anyone who is #ActuallyAutistic, and the difference here is striking. It is clear that the Government intends to empower all autistic people, from earlier diagnosis to reducing the employment gap. However, there is a long way to go with only 22% of autistic people in employment (compared to 52% of the disabled community and 81% for non-disabled people). For too long, people like myself have had to deal with bullying at school for being ‘different’ and late diagnosis due to not fitting a fixed view of autism. Educational and medical professionals must receive training in how diverse the autistic spectrum is, and this strategy could be the first step.

‘I have high hopes that this strategy will be the start of a positive change in the lives of autistic people, especially those with high support needs and those in incarceration. That said, I remain sceptical that this will be enough, and the proof will be in the proverbial pudding.’

View full details of the new strategy on the Government website. Later this month, the government also launched a new National Disability Strategy – read more here.