Why speaking out about Autism matters
What adjustments could your GP make to ensure good communication with anybody with autism, especially people who are high functioning or may not yet have a diagnosis? Bob Dowd, Family Services Manager at Centre 404 and Emma Whitby from Healthwatch Islington explain how they hope to improve health and social care services.
Interview by Nicola Baird
Centre 404, on Camden Road, recently celebrated 65 years supporting people with learning difficulties and their families. It is well known in north London for offering shared housing, practical clubs for all ages as well as advice for carers. But if you have autism, and are high functioning, there is much less on offer. All this is about to change – in part due to the Autism Act of 2009.
That’s why Centre 404 is working with Healthwatch Islington to encourage adults with autism, but who are high functioning, to share their experiences about going to hospitals and doctors’ surgeries in a bid to improve services for this sizeable group of people.
“Autism is a spectrum,” explains Bob Dowd, Centre 404 Family Services Manager who grew up in Islington and now lives in Archway. “At Centre 404 all of our families meet statutory requirements for a service. The Autism Act of 2009 has put the onus on the local authority to provide services to all people with autism, including those with Asperger’s or who are high functioning. Until now this group has been denied access to services because there was no clear pathway for them. It’s an unseen disability and can have a serious impact on an individual’s mental wellbeing. With the right support people will be able to use universal services, they won’t need special services.”
Emma Whitby, Chief Executive of Healthwatch Islington reckons the feedback could usher in big improvements for between 2,500-4,000 adults in Islington. “Coming in this year is the Accessible Information Standard which requires any NHS provider or local authority service to record the communication needs of the people using that service. We want to maximise the impact of this by collecting feedback from people with autism that we can share with the Partnership Board,”
“There are a lot of assumptions about autism, like people are non empathetic which isn’t true,” adds Whitby, 38. “But if you are autistic you may experience needs differently and find taking in information hard at the GP or a hospital appointment. The provider should be aware of that from your notes, but then the information needs to be tailored to the individual, by checking it’s understood, not assumed.”
“We’re not expecting any local provider to make changes yet,” she adds. “First we want to listen to people who have autism, or who know someone who is autistic, and hear their solutions in their own words.”
As an enticement everyone who offers information about their autism experience will be in with a chance to enter a prize draw.
The plan is to collect information this autumn – via face-to-face interviews, phone, email and focus groups – to create a report that will be published in January 2017.
“All the information will be confidential,” reassures Dowd. The anonymous feedback will then be shared with health and social care providers, such as Islington GPs and Whittington, Moorfields and UCH hospitals.
“We want people to encourage friends and family to join in,” says Dowd who already has more than 1,600 families on the Centre 404 database, adding that “you don’t have to have an autism diagnosis to talk to us.”
Dowd, 62, who has been working in social needs for 35 years, and Whitby, who is passionate about helping people take control of their health needs, have high hopes that the information will lead to increased awareness about the ways health and social care providers can adjust what they do when a person has autism. For example it could see organisations appointing an autism champion able to give tips to staff about dealing with clients with autism. It should also see organisations improve relevant policies and procedures.
Whitby is clear that there is no agenda though and the report “will be led by what people want to tell us.” Questions to answer might include:
- Experience of using health and social care services - what worked well and what worked better?
- Feelings about the assessment process for their autism diagnosis, and whether it happened in a timely way?
If you are autistic, or know someone with autism, you can share your insight and help us all think differently by contacting healthwatchislington.co.uk/autism or call 020 7832 5814. As a bonus everyone who offers feedback will be entered into a prize draw.