After the recent news that adults with Down’s syndrome are to be advised to shield, our final blog, though by no means the least important, got moved back into November. The topic of dual diagnosis in Down’s syndrome (autism/ ADHD) is one that is close to our heart at the Foundation. Many will be aware our chair, Dr Corcoran, is also a psychiatrist and in her clinical work has seen the issues facing those with the most complex needs first hand. Poor provision of diagnostic services, educational setting failures, over medication, poor medical care and lack of research all affect those with dual diagnosis (DD) in a way that is more severe and leads to worse outcomes-including increased rates of death .
Trying to unpack why leads you down the rabbit hole: diagnostic overshadowing, prejudice, lack of training of professionals to support those with complex needs or specialist clinics and sadly poor funding to many arms of the system that is supposed to serve people with DD and their families i.e. learning disability services, mental health services, paediatrics, adult services and social services.
As we’ve seen there is a reluctance to see those with complex neurodevelopmental conditions (NCDs) as vulnerable and their families grow hoarse demanding better diagnosis and care. To this end we became one of the founding charities in the Embracing Complexity Coalition back in 2017, to come together to fight for better services and research to the most under served in our communities. Charities too have to come together and put aside their own agenda (and fundraising priorities) to put those they serve at the forefront.
How common is Dual Diagnosis in DS?
The rate of autism on our 2020 Covid-19 survey among 900 UK individuals with DS was 12.3%, higher than the last published UK paper of 7% (1) in 2007. ADHD was present in 3.4% of our survey sample fitting with previous estimates.
The Foundation will continue to make it priority to lobby for those who have been pushed to the fringes of multiple communities, not feeling a sense of belonging to any group. We will promote and fund research that is looking to make a difference in their lives and improve their lives in real concrete ways: fighting discrimination, better service provision and improved access to healthcare.
My son George is not “more Downs” than any other child. What he does have is a dual diagnosis of DS and Autism. This makes his learning disability very severe – that’s the truth! He has no words and is still in pads, has the odd seizure and severe oesophagitis. He makes loud repetitive monotone noises, zones out for hours, pulls my hair, pushes and pinches me and is very contrary. He needs help with absolutely everything. Everything.
My son is also amazing. And that’s the truth too. He looks into my eyes as if he can see my very soul – deep and penetrating, sending his love straight into my heart. He touches my face and my head while looking at me intently, focusing so hard on being gentle. He turns towards me at the most unexpected moments and throws his arms around my neck and smiles a beautiful, open, pure look of adoration, squealing with joy. He does the same to his dad and his sister. You don’t need words to say ‘I love you’. Oh and sometimes he even does what I say!
But he is neither completely in the Down’s syndrome camp nor the autism one. He has a unique set of challenges. He and his peers with dual diagnosis need to be part of the greater community and part of the research therein, to help them progress and live happy and fulfilled lives. This is my wish for him.
We need more research now.
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Our deep thanks to Tatty and George for sharing their story.