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Autism and disability: Reframing our view

Recently i have seen a lot of articles and posts on social media distancing the autistic neurotype from the word disability. For the most part i understand where this is coming from, the word disability has been associated with poor life outcomes, and associated with being somewhat of a burden on society and thus something that needs to be cured or eradicated. This is obviously very problematic. What needs to change is not the association of autism and disability, but our understanding of what the word disability means.

Disability is not a dirty word. Disabled people such as myself have the right to exist and enjoy life without people calling for our eradication from society. Disabled people are just as valid as non disabled people. This is why the discourse i have seen surrounding disability and autism is so problematic to me. People are distancing themselves from the word disability due to ableist misconceptions about the meaning of the word.

In the context of autism, as with all life-long conditions and neurotypes, the degree to which autism is disabling changes not only on a case by case basis, but also day to day, hour to hour. For the sake of analogy, allow me to use an example from the medical world (possibly not a perfect example, but i feel it explains my point).

Consider asthmatics. Some asthmatics live their life with very little support needed for their asthma, perhaps not even needing to use inhalers every day, on the other hand, some asthmatics require a great deal of support from specialists and specific medications, the latter obviously finding their asthma particularly disabling. However it is not that simple, any asthmatic will tell you that there are times when their asthma gets really bad and impacts on their life, and those who require more support may find that they have days when their asthma is not as disabling, regardless of the day to day changes, asthmatics still face many challenges and asthma is therefore a disability. As a side note, this is why functioning labels are so problematic. They ignore the ever changing field of strengths and challenges.

In much the same way, some autistic people may navigate life relatively simply (that’s not to say that they don’t face significant challenges) while others may struggle with some of the more basic demands of life such as holding down a job, or remembering to eat and shower. For this reason, i personally believe autism is a disability. Even those of us who navigate the world more easily face challenges which must be overcome.

Of course when i talk of disability in this context, i am talking of the social model of disability. Unlike my asthma example, which is quite definitely an medical disability, autism is a disability because society does not make appropriate accommodations. This is the social model of disability, which i will not get into describing in this article because really it deserves its own article.

There is nothing wrong with being disabled, disabled people are valid people who have much to offer the world. As autistic people, we must stop distancing ourselves from the word disability. It is already hard enough to gain support as autistic people, let alone if we ourselves start denying the challenges we face.

For the sake of those of us who have spent many years trying to access appropriate supports, we must reframe our view of disability. I say it again, disability is not a dirty word. We need to teach people that disability is not something that needs eradicating, but is in fact another thread in the complex tapestry of human diversity. We need to celebrate disabled people and their contributions the way we do non-disabled people. We do not need to be afraid of admitting we (autistic people) have a disability.

What is MMS and why has it been in the news?

If you’ve been on social media recently you may have noticed stories appearing about people feeding their children bleach in a misguided attempt to “cure” their autism. Specifically the articles refer to a protocol called MMS.

MMS is an acronym for Miracle Mineral Solution. First promoted by ex-scientologist Jim Humble in his book ‘The miracle mineral solution of the 21st century’ (2006, self-published). Jim humble claimed that MMS could “cure” everything from cancer to AIDS, but specific to this article, he claimed it could “cure” autism. None of these claims have ever been tested in a clinical setting.

MMS contains a chemical called chlorine dioxide, an industrial bleach used in water treatment and the textiles industry. The high doses administered by MMS quacks can cause nausea, vomiting, shedding of the mucous membranes of the intestines (which many quacks have claimed are rope worms- they aren’t, that’s your childs intestinal lining), and low-blood pressure through dehydration to the point that it can become life threatening.

Some of the logic behind MMS is the delusional belief that autism is caused by parasites and/or fungus, and that the MMS kills these foreign invaders thereby freeing the child from the grips of autism. The reality is that these people are force feeding bleach to their children, with many using forced enemas to get the MMS into the child. That’s not treatment, that is sexual assault.

MMS is dangerous for more reasons than the toxicity of the active ingredient. Parents and carers are forcing this upon their children, teaching them that just because they have a neurological difference/disability, their bodily autonomy does not matter. They teach these children that it’s okay for an adult to do something that makes you feel uncomfortable or scared.

The battles against MMS has raged for a number of years now, with notable activists such as Emma Dalmayne and Fiona O’Leary making great strides in the UK and Ireland. The battle is far from over, despite great advances such as the removal of quack Kerri Rivera’s book from amazon, there are still many people on social media promoting this dangerous protocol to a large audience.

Many autistic people have stood up to the MMS abusers, but this fight needs more, we also need our allies to listen to us, and help as dispel the myths and stigma that make autism seem so terrifying to these parents and carers. Share articles and join groups led by autistic people. Keep this topic in the limelight, that is how change is made, people need to be outraged.

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.

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