The Parent Movement and Self-Diagnosis

Content: This post contains ableism.

 

Recently, I’ve been getting som pieces of hope regarding the movement of parents to neurodivergent kids. I’ve seen autistic parents speak up about the ableism within the parent movement and even though it has mostly been met with silence or total dismissal, I thought that maybe some kind of change is happening. Then I got a reminder of how bad the situation actually is.

Where I live, most parents to neurodivergent kids don’t know what ableism is. There is no organization for self advocacy for autistic or neurodivergent people, only one for people with specifically Asperger’s syndrome and they are very ableist themselves, not wanting to have anything to do with people with people with intellectual disabilities or people with what they consider a too big support need. The big discussion point in media is if autism and ADHD really exist or if it’s just made up by Big Pharma and lousy parents who can’t control our kids. Autism Parents are not used to being questioned by autistic adults and the parent movement is so permeated by ableism that it seems impossible for most of the parents to even imagine advocacy without ableism. Neurodiversity isn’t only misunderstood, most Autism Parents haven’t even heard of it.

The other day, I was also reminded of how the concept of self-diangosis is basically non-existing where I live. Despite the fact that there are multiple factors that will decide if a formal diagnosis is possible or not, even so-called self-advocates often refuse to see the need to recognize self-diagnosis. I came out as a self-diagnosed autistic and was basically told that it couldn’t be recognized and it hurt. It hurt more than I expected. It hurt because even if I wasn’t expecting miracles, I had some hope for this specific context and group of people. When a person in charge declared that they didn’t care at all about all the reasons why a formal diagnosis isn’t possible for all autistic people, I was a bit disappointed.

Because how can you declare wanting to empower neurodivergent people but only those privileged enough to get a formal diagnosis? How can you refuse to care about for instance the racism, ableism and sexism that keep a lot of neurodivergent people from being diagnosed? I don’t understand how anybody can defend throwing some people under the bus in a struggle for empowerment and against oppression.

This is so typical and one of the reasons for why I’m creating more and more distance between myself and most other parents of neurodivergent kids. I work hard on dealing with all my internalized ableism, not only for the sake of my kid but also for my own well-being. Being around Autism Parents and the rest of the parent movement is too much of a reminder of why I should hate myself.

I’m Your Alien

I will never forget the first time I met with a nurse at a clinic for autistic children. Six months earlier my child had been diagnosed  as autistic and a referral letter was sent to this clinic. Now we were finally here, me and my partner. My expectations weren’t that high but I knew they had occupational therapists and I was hoping that they could help us make the preschool our kid attended more accessible. We had a fairly good cooperation with the teachers but it was hard work to do on our own, and I thought that getting some help to increase accessibility and support would improve my kid’s health by decreasing his stress level.

One of the first things that the nurse told us was “These children rely heavily on motivation to learn new skills”.

I froze. I couldn’t pinpoint exactly why but there was something in this sentence that made me highly uncomfortable. Obviously a part of it was the motivation thing, since it’s a central part of ABA and that wasn’t something we wanted, but there was something more that made me react. There was something in how this nurse talked about autistic kids. “These children…” they were the Others. They were not a part of us.

During the rest of our meeting she talked about autistic kids in the same way, creating a distance between us parents and our autistic kid. At this point I wasn’t clear about that I was autistic, but I had my suspicions. I couldn’t articulate it but I was very uncomfortable and somewhere in my head a thought kept repeating itself: You are talking about me. These kids you are talking about like aliens, I’m one of them. I’m one those people you don’t consider a complete human being.

Needing help for ME as autistic

I have recently been formally diagnosed with myalgic encephalomyelitis, ME. It has been suspected by several doctors for years but for various reasons it wasn’t until now that somebody had the courage to be clear about it. After a couple of years in the neverland, where I was considered an abnormality wherever I went in the healthcare system (even at the clinic I went to for my hypermobility/EDS), I’m now starting a process of getting actual adequate healthcare for ME. This means trying out some meds and getting help from an occupational therapist to make my everyday life easier.

I’ve only met with this OT once, but so far she seems good. Besides from a wheelchair and adjustments and equipment in my home, she brought up the question of applying for practical help with different things. It’s still unclear what I will qualify for and be able to afford, but I have to start consider practical help with cooking, cleaning and washing my hair. Basically because my partner can’t be both mine and our child’s assistant and work full time at the job that brings an income.

The thought of practical help is overwhelming. Partly because it’s going to be a lot of work to make it happen, but also because I have to accept that I’m ill. I have to trust a new person. I don’t know if I can trust someone enough to allow them in my home without it feeling like a violation of my integrity. Because my integrity has been systematically violated enough during the last couple of years in the healthcare system.

One of the most taxing things about this is me being a self-diagnosed autistic. Since I don’t have a formal diagnosis as autistic, it will be very hard to claim the right to adjustments to needs coming from my autism. I have a really hard time shifting focus. I really don’t have the mental capacity for too many social contacts, meaning that it will be a huge effort for me to have one more person in my life. I can’t have five different people coming into my home and into a very private sphere. A person that is supposed to help me cannot make polite smalltalk to me, because that steals too much energy from me since I find it stressful. I need help with somebody folding laundry and putting it in my closet, but it’s very important they put it in order. I’m picky about food, partly from my ME (some symptoms gets worse from certain food) and partly because I have a high sensitivity to textures and smells. The only reason I’m not underweight is because I’ve stopped trying to eat things that simply feels disgusting, which puts me an a limited diet.

As an autistic, there are things in how I communicate that needs to be taken into consideration in order to get practical help to work, and not stress me out. But in the healthcare system, I’m not open about being autstic and I don’t know how this will work out.

Longing for confirmation and comfort

I’m kind of ashamed to admit this but sometimes I find myself in this really desperate longing for confirmation of my autistic identity. Very few people that know me behind the anonymity know that I’m autistic, and I feel like I’m fooling people, or being deceptive and manipulative. I don’t want to live in the closet like this, but I have to for my kid’s safety. I guess that’s why I sometimes long so hard for somebody to acknowledge my identity. For somebody to see that certain things that I can’t do or do in a specific way is because of me being autistic, and not because of my other disabilities.

There are people in my life who know that I’m autistic and respect it, but most of them aren’t autistic themselves. To be honest, I don’t know why that matters so much to me. But it does. Maybe I just wish I had a context, or an autistic community of people where I could stop the passing act. Where I could LEARN to stop the passing act, because right now I don’t really know how to stop it. Not that I always pass, because I do come off as weird, but my weirdness is perceived as being rude, shy, too intense or a bunch of other things that tend to be ableist with a touch of misogyni. That’s not a confirmation of my identity.

On top of longing for confirmation I’m longing for something else. This is even harder to admit but I need to state it: I want comfort. I’m not very good at being comforted by other people but right now that’s what I want. I want someone to hold me and help me carrying this mourning because it’s too much for me. A couple of months ago I wrote that I won’t mourn forever, but right now I’m wondering if it will ever stop.

I won’t mourn forever

“I’m mourning growing up without knowing I’m autistic, but at some point it will change. It won’t be like this forever.”

The other day something rare happened. I talked to my partner and for once, we managed to have an honest conversation about somthing else than how to deal with a lot of practical stuff and worry about the future for our child. That brief moment of honesty and understanding did something to me and I heard myself say the quote above. 

It was a relief to say it and realize that this energy consuming grief is something that will pass. Because I think it will. I’ll probably always be sad that I didn’t get a fair chance to understand myself until I hit 30-something, but there’s a good chance that it will turn into a sorrow that’s easier to live with. It won’t be a fulltime mourning for the rest of my life.