About our name: what we mean by ‘Treating’ and ‘Autism’

Our name, Treating Autism is a shorthand. We realise that it can be misinterpreted mostly because both terms—treating and autism—are shorthand and mean different things to different people. However, if we didn’t use a shorthand, this is what our name might look like:
TREATING the often-ignored comorbidities in autism – due to atypical presentations or diagnostic overshadowing or just unfounded assumptions – found at much higher rates in people diagnosed with autism than the rest of the population, because clinical evidence and published research (still in its infancy but solid and promising nonetheless) has shown that when comorbidities are properly diagnosed and treated/managed that very often the debilitating symptoms of autism itself are reduced or even disappear entirely, and because a diagnosis of autism does not negate your human right to appropriate medical treatments.

TREATING and improving the mental/cognitive and executive dysfunctions found in almost all individuals with AUTISM. These executive dysfunctions include but are not limited to: motor dysfunction, memory problems, sensory dysfunction, language impairments, inability to learn and/or retain information, speed of processing impairments, visual-motor coordination impairments, impulsivity, aggression, anxiety, self-harming, inability to tolerate lights or sounds, severe stress reaction to change or uncertainty. By addressing and treating those difficulties an improved quality of life and independence can be enjoyed by individuals with autism.

While this non-shorthand version is more accurate about the aims of our charity it is neither easy to remember, or even fit on a poster. Furthermore, even these many words may not clear up the misunderstanding. The term ‘autism’ itself is open to interpretation — it means different things to different people, and not just because it is a spectrum disorder. We’d like to use another shorthand, and ask you to please consider this excellent blogpost about the weak lexicon we are forced to use when talking about our children and both their strengths and their struggles. It is apparent how our name can be misunderstood in a variety of ways.

Those of us who run Treating Autism know that having autism does not in any way take away your right to individuality. We embrace diversity and therefore demand that therapies, treatments, and support always be for the individual and his or her circumstances, not just for a label (or lack of). We also recognize that there are people diagnosed with autism who lead happy and productive lives and who would have no reason to choose to pursue treatments or support. Both of these facts mean that in one sense, there really is no treating autism, but only supporting individuals and providing appropriate treatments and therapies for specific comorbidities or impairments.

As parents, it is both our right and responsibility to make the choice to get the supports and treatments for our children. But the current reality is that a diagnosis of autism often means a lack of medical help for conditions that would otherwise receive appropriate investigations. The current reality is that many successful therapies and supports are not provided to our children and are unaffordable for the vast majority of families. We know the stories of hundreds and hundreds of individuals who have received suitable nutritional, medical, social, and behavioural supports and interventions and seen their health, mental/cognitive/executive functions, and quality of life improve enormously.

We absolutely do not reject people with autism.

What we reject is the assumption that because someone has an autism diagnosis he or she should have to suffer with comorbidities and impairments that with appropriate help could be alleviated. In fact, we reject all assumptions that have been unproven yet shared as facts. For example, when our charity was established it was widely shared as a fact that people with ASD did not suffer with shortened lifespans. This “fact” seemed unlikely to many parents like us. When researchers actually investigated, they found that the average lifespan of someone on the severe end of the spectrum is only 39 years and even those with fewer impairments do not live as long as their non-ASD peers.

And so, back to our name. We hope our name calls attention to the fact that people with ASD often suffer from comorbidities that go undiagnosed and therefore untreated and we are doing everything we can to change that.

We hope our name calls attention to the fact that the majority of people with autism suffer impairments and dysfunctions that reduce their quality of life and hope for independence very significantly, and that those on the severe end of the spectrum are often overlooked by the media and general public, as well as by health care professionals.

We hope that our name reminds people that having autism does not mean you lose your right to a healthy, happy, productive life and that the appropriate treatments and therapies can be crucial to reaching that goal.