Professional language surrounding autism

I have spent a lot of time reading about the link between autism and addiction (some may call it a special interest typical of someone on the spectrum), and one thing I’ve noticed is that the language used by professionals, especially scientists, is particularly problematic when it comes to autism. The language used often describes us as broken and malfunctioning, while many autistic people, including some autistic academics that i have spoken to, would argue that autism is simply a different way of being rather than some kind of illness (I will leave the discussion of autism as a disability for another time).

Professional discussions of autism tend to describe how parts of the brain ‘malfunction’ in autism, leading to ‘maladapted’ behaviours. This language seems to be used largely by neurotypical experts, and leads to issues for autism acceptance. The language used by professionals is important, it frames how the world views us as autistic individuals. When professionals describe autistic people as broken or malfunctioning, the world hears a story of incomplete individuals, suffering from a terrible blight.

An example of how this plays out is the harmful quack therapies that many autistic people are subjected to, such as ABA and MMS. These therapies rely on people’s fear of autism to sell their dangerous and frankly abusive treatment models. Clinical descriptions of ‘misfiring’ neurons tell parents that something is wrong with their child, something that needs to be fixed. Of course autism isn’t something to be fixed, it is not cancer, no treatment, no matter how aggressive, will ‘cure’ the autistic person being treated. Thus there is no justification for such treatments. However, the language currently used by professionals appears to justify such treatments to some parents and carers.

Professionals working on the subject of autism (and neurodivergence in general) need to be more careful about the language they use, i have no doubt that for the most part, they intend no harm, but in the language they use they indirectly inflict harm on autistic people all around the world. In my opinion, this highlights the need for a two-way conversation between autistic people and researchers in the field of autism.

It’s time for professionals to think more carefully about how they describe the subjects of their research. Likewise, autistic people, especially those in academia, need to stand up and be heard when it comes to how the world describes our neurotype. Words are powerful, it is up to us as members of society to use them responsibly.

Antivaxxers and Ableism

Back in 1998, a now disgraced former doctor named Andrew Wakefield published a paper called “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children”. In it he alleged that the MMR vaccine caused Autism. Eventually it came to light that his paper was at the very least, ethically dubious, at worst, it was discovered that he had published this paper while trying to get his own version of the MMR vaccine patented, a clear conflict of interest when it came to telling the truth.

Unfortunately it was too late, despite the paper being retracted, the damage had been done. Parents became hysterical as more and more stories came out alleging that their children had developed autism after receiving the MMR jab. Simple fact checking and mountains of scientific evidence tell us that no, vaccines do not cause autism, and this is something i could write about at length, but this is not what i want to focus on in this article. What i want to focus on is the inherent ableism in the anti-vax movement, and the damage that it does to the autistic community.

Antivaxxers are terrified of autistic children. referring to them as “vaccine-injured”. On the face of it, one could understand where these parental fear come from. For years, stereotypical representations of autistic children have suggested that they will never live happy and fulfilling lives, leading parents to believe that autism means a life sentence for both children and parents alike. This is clearly wrong on many levels. It is further perpetuated by the use of functioning labels, with those labelled “low-functioning” denied agency and dehumanised at every turn. So called experts (Like Lovaas, who helped to develop the abusive autism treatment known as applied behavioural analysis) have consistently made autistic children out to be animals who require compliance training to stand any hope of fitting in with society.

None of this is an excuse, if these parents would only listen to science and autistic voices, they would know that not only do vaccines not cause autism, but autism is not a bad thing. It is not a word to be said in shame. They wilfully ignore and shout down autistic voices who are fighting for the rights of all autistic children, anti-vax children included. Anti-vaxxers perpetuate the narrative of dehumanising the autistic community by cherry picking the most vulnerable moments in autistic children’s lives and posting them on the internet for the world to see. They send a message that it is better to have a child die of a preventable disease, than for them to be autistic. This ableism is used to justify abusive quack treatments such as MMS (chlorine dioxide) and chelation therapy. Treatments that literally maim and kill autistic people, while offering to “cure” the person of their autism.

Autistic people are not damaged goods to be used by the anti-vax community for the sole purpose of selling fear and lies. We are different, yes, but different is not damaged. Different is not bad. In order to challenge the ableism of the anti-vax movement, people need to start listening to autistic voices. Autistic people need to continue the work of fighting against stigma and stereotypes. We need to spread a positive message, one of acceptance and understanding. Allies of autistic voices need to stand up against the voices of the anti-vax community and tell them that their rhetoric is unacceptable.

Recovery services as an autistic adult

In my previous article i discussed the frustration of being autistic in a recovery service that was not designed for people like myself, in this article i intend to go into a bit more detail.

There is a problem with substance misuse recovery services. Many if not all of these services do not take into account the autistic individuals who may need to use them in order to find recovery. This presents a unique challenge to autistic addicts who may be seeking recovery from drug and alcohol addiction. I was under treatment with drug and alcohol services for approximately three years, in that time i came a long way, but appointments were an extremely challenging aspect of my recovery for a number of reasons.

Waiting rooms can be horrible for autistic people, but waiting rooms in substance misuse services are especially uncomfortable. The lighting is often bright and fluorescent, beaming down on you and hurting your eyes. You are surrounded by people in crisis, some of whom want to talk to you as they pass the time until their appointment, some people may be extremely distressed, and as such may be making a lot of loud noise. Straight away this waiting room is sensory hell for autistic individuals. How is an autistic person supposed to find recovery when walking through the door of such a building is enough to drive them back to the drink and drugs that they are trying to get away from?

The appointment itself if also problematic. For those with executive function issues, keeping the appointment may be a challenge in itself, my appointment reminders were often on small business cards that i was handed at the end of my previous appointment, and was expected to use as a reminder. Once you overcome this issue, and the previously mentioned challenges of the waiting room, there were the mechanics of the appointment itself. For me, these appointments usually meant sitting in a one to one environment, directly across from a key worker (who most likely has not had specific training in dealing with neurodivergent individuals), in a windowless room, with white walls and the aforementioned lighting from hell. In this environment you are then expected to discuss deeply emotional issues, and take note of your key workers advice. If you are on opioid replacement therapy, you may also need to discuss doseages of methadone or buprenorphine (subutex), something which can literally be a matter of life or death for some addicts.

As any autistic person can tell you, this is somewhat of a hostile environment if you are on the spectrum, so what can be done to make this environment more friendly?

Quiet spaces in waiting areas are important, giving people somewhere to escape to if the noise of a waiting area gets too much. Sensory friendly lighting is also important as the standard lighting may cause physical pain to an autistic individual. To help with executive function issues, appointment reminders should come in multiple forms. A reminder can be given in writing at the appointment, a letter sent to the persons homes or ‘care of’ address, and a telephone reminder given the day before or the day of the appointment.

Once in the appointment, peer support is vital. Having a peer who understands your needs as an autistic individual may aid communication, taking some of the pressure off of the one to one environment. Rooms with natural or sensory friendly lighting may make the experience less like sensory torture, this could also be aided by making walls colour that dont glare in the lighting. Finally everything said in the appointment should be provided in writing for future reference, many autistic people struggle with retaining huge amounts of spoken information at once.

If these sorts of changes are made, the environment for an autistic adult becomes considerably less hostile. Autistic addicts need to be recognised as a unique demographic with their own unique set of needs. Until this is done, autistic addicts will continue to struggle through recovery.

Standing on the corner: Where autism and addiction meet

As an autistic individual, i have faced many challenges over the years, but one of the greatest challenges i have faced was over coming addiction.

Many people view addiction as a disease, and as far as diagnostic criteria go, they’re not wrong. I however view addiction as a symptom- a symptom of an unmet support need. For me the primary unmet support need was that of my mental health, but having grown up autistic without a diagnosis, i had learnt to mask my struggles so as to fit in more effectively. When i started hearing voices i was understandably terrified, but due to the stigma surrounding mental health i believed that admitting to hearing voices would land me in an institution.

Around this time i had fallen in with a crowd of friends who like many teenagers enjoyed partying, engaging in binge drinking and drug taking as a recreational activity. I Quickly learned that drinking and taking drugs suppressed my voice hearing and the associated anxiety and paranoia. Fast forward six years and i am in the grips of addiction, my primary drugs of choices are opioids, benzodiazepines, and the increasingly infamous spice. This is where things start getting complicated.

My whole life i had been raised to understand that i was more than likely on the autism spectrum, but sadly had never been able to receive a formal diagnosis (despite repeated efforts, i was not diagnosed until age 26). This presented huge issues because i was being treated by a system that did not understand my needs fully. For two years i was misdiagnosed as having Emotionally Unstable Personality Disorder.

Perhaps more frustrating, the mental health services and substance misuse services treating me would not refer me for an autism diagnosis while i was in active addiction. I was out in the cold. Here is the key issue in this intersection between autism and addiction; autistic people are having their neurotype ignored at a time when it is vital that it be taken into account.

Substance misuse services (and mental health services in general) are not designed with autistic people in mind. Those with a diagnosis have their needs ignored, and those seeking diagnosis are asked to complete the seemingly impossible task of achieving sobriety before they can have their needs recognised.

I believe that a major contributing factor to this is the distinct lack of research conducted in the nature of co-occurring autism and substance misuse disorders. A brief search of the literature shows that very little research has been done into this overlap. It appears as if professionals do not even believe this is happening, but it is. Many autistic folk suffer at the hands of addiction, usually as a mechanism of coping with the struggles presented by their autism. Aside from suppressing my mental health issues, drugs and alcohol made it easier for me to socialise and feel like a fitted in, they also suppressed my sensory issues. Is it so surprising then that i ended up an addict?

It makes me angry that this link is so often ignored. Addiction is central to my existence just as much as being autistic. Just because i have stopped drinking and taking drugs, does not mean i am cured, it is a battle i will fight for the rest of my life, like countless other addicts. Until services reformat themselves to include autistic and other neurodivergent individuals, we will all be out in the cold, and this will not happen until the research is in place to support it.

An introduction to Emergent Divergence

Hello and welcome to Emergent Divergence, my name is David Gray-Hammond. In this blog I will be discussing autism and autistic rights, addiction and substance misuse, and mental health (and the intersection at which they overlap). I myself am autistic with co-occuring OCD, psychotic experiences and complex trauma, i am also in recovery from drug and alcohol addiction.

The goal of understanding and acceptance of these issues is a journey that i hope you will join me on as i seek to delve into the viewpoints of those who hold them close to their hearts. I look to advocate on the behalf of those whose voices may not necessarily be heard.

I hope that you find this blog informative and thought provoking.

You can also follow me on Facebook, Twitter and read more of my writing on NeuroClastic.

Find a link to a session I did with Aucademy on autism and addiction here.

Continue reading “An introduction to Emergent Divergence”