Join me at the Thinking Autism Conference. Let’s learn together.

Mar 6, 2019 | reThinking Autism blog

It’s 2019, and scientific certainties concerning the true nature of autistic spectrum disorder remain stubbornly elusive. Researchers acknowledge it’s a puzzle made up of disparate biological and environmental pieces, seemingly fitting together in infinite combinations. But where does that leave us, the parents, carers, frontline professionals and autistic individuals dealing with what can feel like an endless, unacknowledged daily grind, trying to stay afloat in a sea of contradictory information?

Traditional pharmaceutical treatments offer a temporary band-aid at best. With public services buckling under the strain of an explosion in rates of autism diagnosis and a generation of severely autistic children transitioning into adulthood with complex support needs and ageing parents, many in the autism community face a future filled with anxiety-inducing uncertainty.

The public face of autism is rapidly morphing into something almost unrecognisable to anyone with personal experience of severe autism. The all too familiar reality of institutional abuses, families in crisis, unmet medical needs and premature mortality is in the process of being transformed into a shiny new autism narrative, one where autism is sold as a benign neurological difference, even a superpower.

In many respects, this ‘autism as a spectrum of human neurodiversity’ narrative appears to be a fairytale constructed by those unable to conceive of a reality where some autistic individuals might, for example, never possess the necessary skills to drive a motor vehicle, or even feed and dress themselves, and who will likely spend their lives entirely dependent upon parents, carers and social care professionals for their very survival. Coming at an astronomical cost to taxpayers in a time of austerity and radical cuts to public services, this puts a significant strain on an already ailing health and social care system.

It’s also a world where language policing, censorship and the sensibilities of a privileged few take precedence over the wants and needs of profoundly impaired autistic humans whose continued existence depends on appropriate medical and social care provision. By virtue of the severity of their cognitive impairment, these severely disabled individuals are also denied a voice within the booming autism self-advocacy industry, which demands a particular profile of ability and neurology to take part in the conversation. The neurodiversity mantra ‘nothing about us, without us,’ rings hollow in the face of such exclusionary applications of what should be a philosophy of inclusivity for all humans.

Fortunately, in this sea of confusion, there exists an organisation whose purpose is to help families, professionals and individuals affected by autism to navigate the tidal wave of small scale research studies and anecdotal accounts of successful treatments. Thinking Autism is a charity that stands as a beacon of clear thinking, with their May 2019 conference in London bringing together world-renowned experts on evidence-based treatments for the medical comorbidities associated with autism.

Disturbingly, the mainstream medical community has effectively abdicated responsibility for treating those impacted by severe autism, and diagnostic overshadowing abounds. With an average life expectancy of 39 for those on the spectrum, this particular autistic humanoid is living on borrowed time.

In reality, though, it is most likely those severely autistic individuals with additional intellectual disabilities and other comorbid conditions, who are drawing the short straw in the longevity stakes. They make up an estimated 50% of the autistic community, have the highest support needs and are the most vulnerable to abuse and death by misadventure or medical complications. As the group most in need of effective evidence-based treatments and interventions, it’s a sad fact that they are the very same population which is almost entirely excluded from research samples in this vital area of study, as was made clear by a recently published review of the scientific literature.

Fortunately, in this sea of confusion, there exists an organisation whose purpose is to help families, professionals and individuals affected by autism to navigate the tidal wave of small scale research studies and anecdotal accounts of successful treatments. Thinking Autism is a charity that stands as a beacon of clear thinking, with their May 2019 conference in London bringing together world-renowned experts on evidence-based treatments for the medical comorbidities associated with autism.

I am very proud to be attending such an event, a first for me in my new role as ambassador for Thinking Autism. As an autistic adult, I tend to find appropriately organised opportunities for socialising are few and far between, and an event that motivates me to step outside of my comfort zone is as rare as hen’s teeth.

Featured speakers include Dr Adi Aran and Dr Orit Stolar from Israel & Dr Annabelle Manalo from the USA, presenting cutting-edge research on medical cannabis and the endocannabinoid system and its relevance to autism; Federico Balzola MD from Italy on autism and gastrointestinal symptoms; Richard Frye MD PhD from the USA on metabolic and seizure disorders associated with autism; Iwona Zarnowska MD PhD and Prof Tomasz Żarnowski from Poland on the application of a ketogenic diet in epilepsy and autism, and Tim Ubhi MD delivering a UK perspective on PANDAS & PANS.

Other highlights include a review of a six-year case study, presented by Peter Lloyd-Thomas, following the novel, science-based treatment of a child with severe autism, as well as Dr Ben Marlow’s presentation on the importance of approaching the unique underlying biology of the different autisms in different ways, with a plea for the NHS to recognise that autistic children need far better standards of medical care.

I am very proud to be attending such an event, a first for me in my new role as ambassador for Thinking Autism. As an autistic adult, I tend to find appropriately organised opportunities for socialising are few and far between, and an event that motivates me to step outside of my comfort zone is as rare as hen’s teeth.

The Thinking Autism conference blends the opportunity to quench my thirst for autism knowledge, attend accessible social events where I can meet those unique individuals I have built a friendship with online, and the necessary support from dedicated members of the Thinking Autism team, all of whom have a lifetime of first-hand autism experience.

Unlike many autism events, the conference welcomes and accommodates autistic adults, with concessionary rates available. I genuinely hope to see you there — I’ll be making myself useful taking snaps and tweeting live updates on the hashtag #TAConference2019, so do feel free to come and say howdy.

About the author
Tom is a 38-year-old autistic male. Diagnosed with a speech and language disorder/learning disability as a child, he spent most of his school years in special education before being re-diagnosed with Autistic Spectrum Disorder. Thomas spent five years of his adult life as a psychiatric inpatient and currently resides in supported accommodation in the South West of England.

Thinking Autism International Conference 17-19 May 2019 Central London

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