Misinformation about autism and learning disabilities needs to stop - Claire Strachan
Having previously worked for the National Autistic Society (NAS) for five years, I voluntarily offered to go on the Oliver McGowan Mandatory Training on Learning Disability and Autism course with one of our clients – Happy Futures in Scarborough. I was interested in the latest developments and having followed Olivers’ story, wanted to see the impact the training was having.
The training was set up by Oliver’s mum Paula, after losing her son in hospital as notes on his medical records were ignored and he was given anti-psychotic medication on more than one occasion. Something his notes stated clearly not to administer to him. She has campaigned tirelessly in memory of her son, bringing forward a parliamentary petition.
The training is now being used across Care Quality Commission (CQC) registered care and the NHS, so that people with learning disabilities or who are autistic receive appropriate reasonable adjustments. These can include letting someone pace round, stimming as that is their way of coping, adjusting lighting or even tics. Hospital passports detailing the challenges an individual has, and what adjustments they need are also being used more, but is considered to be ‘good practice’, and not yet covered by all areas of the NHS. This results in confusion for some staff and the individuals and their families when attending hospitals out of area.
However some of the stats in the training, and also in a recent campaign by the NAS are startling. Only three in 10 autistic adults are in work, which is one of the lowest for any disability. Nine in 10 autistic people have experienced mental health challenges, and one in four receive a negative reaction when they tell people they are autistic.
Combined with Donald Trump's recent claims that paracetamol causes autism, the misinformation and disadvantages for autistic people and people with learning difficulties have not improved over the years, in many ways they have got worse.
I particularly appreciated the part of the course whereby autistic people no longer want to be referred to as ‘with autism’, like it is an accessory they can choose to pick up or leave behind.
Mencap have also run a campaign of ‘Myth busters’ to also highlight challenges that people with learning difficulties face. Misunderstandings that they can’t get married; can’t understand; can’t contribute and can’t thrive in a relationship or place of work.
What impressed me about the training, however, is that it has to be co-delivered by someone with a learning disability or an autistic person. This not only reinforces the messages in the training but enables people with learning disabilities or an autistic person to share their own experiences. It also provides employment opportunities that are seriously lacking and gives them a voice.
I was particularly impressed with Tom who is autistic and his own story that he read out of how he has been treated in society since an early age. The treatment he had in school makes me believe that The Oliver McGowan Mandatory training on Learning Disability and Autism should be delivered in both education, and also the workplace. It differentiates between learning disabilities and autism and gives people a clear understanding of both. It provides examples of what reasonable adjustments may be needed in each situation.
The training actually starts with each attendee learning to spell their name in Makaton, which immediately draws attention to needing to communicate in different ways, not just verbally. It raises the importance of addressing the patient themselves, not the person there with them. Tom also commented that even some of his own family still speak to him like a two year old. He is a bright, intelligent person, he just communicates slightly differently and certainly has a great sense of humour.
What shocked me the most in the training though, was the fact that in the pandemic people with a learning disability or autism had DNRs (do not resuscitate) put on their medical records – with no prior consultation with either them or their families.
This was unearthed in a Health Committee report in 2021 and published quite widely. This happened despite strict guidance from the NHS in April, 2020, which said that the existence of a learning disability should never be used as a valid reason for a blanket DNR order. Anonymous healthcare staff said that they found the “blanket DNACPR” decision to be “challenging”, ethically, and professionally.
What kind of world are we living in that such a herd mentally puts such a low price on the value of the lives of people with learning disabilities or autism?
The NAS are currently running a campaign to get people to sign an open letter of support in the fight to call out misinformation, and it will be shared with any politician making false claims about autism, so that they know the truth matters. With 55 per cent of autistic people saying they are afraid to go out due to how they are treated, change needs to happen soon.
Extending Oliver McGowan training outside of the NHS is a good start. Everyone should be aware of how such small changes can make such a difference to the lives of autistic people and those with learning difficulties.
Seeing the training first hand, and the reaction of people on the course, it genuinely is the only way to deliver the right messages from the people facing the challenges.
Claire Strachan is a PR, marketing and fundraising consultant.