My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child

Content Notion: This post describes detailed practices that are often a part of ABA, ableist treatments for autistic people and ignoring of enbies.

 

After years of increasing problems with my mom, I’ve told her that I don’t want her to help out by taking care of my kid anymore. This is a very sad decision both for me and my kid, because parts of her time with my kid have been good. However, her lack of respect came to a point I couldn’t take and after many conversations with her, that totally drained me without improving the situation, I gave up. She constantly crosses my boundaries and she has no understanding of what my kid needs and this leads to her causing a lot of practical problems and poor health for my kid, me and my partner. This kind of ‘help’ is something I definitely don’t have room for. There are so many things that hurt us in this, and in this post I will focus on one of them: the brainwashing of Autism Experts™.

When I grew up my mom worked with something completely different, but around the time my kid was born she started to work with disabled (mostly autistic) children. She had no background in working with disabled people at all and I have no clue how this happened, but it did. Her employers have over the years given her some education and this is unfortunately the shallow kind of manuals based on ABA, because ABA-based approaches and ‘therapies’ are standard practice were we live. In the beginning she was worried about that she didn’t have a theoretical framework but after a while, this wasn’t a problem anymore.

During these years my mom has worked with autistic children in different settings. Mostly in schools and short term living facilities. These are the kind of places were this scenario regarding staff is very common, people without experience and education are hired because they seem to fit for some reson. It doesn’t make sense to me, but it’s reality.

The result of my mom’s ‘education’ about autism is horrific. Like most people working with autistic people (or as they say, people with autism), she doesn’t question ABA and its fundaments at all. She is critical to parts of it but she doesn’t seem to even be aware of the assumptions ABA is based on, like that autistic people aren’t real people. Further, she doesn’t engage with autistic adults as sources of information – as people who are experts on autism – and therefore she is completely in denial about how many autistic people who are adults today suffer tremendously from growing up with ABA.

The only reason for why I’ve allowed her to take care of my kid despite this is that she doesn’t really believe that he is that autistic, meaning that she treats him better than the autistic children she works with. Since she is great with him in some ways, I’ve tried to compromise. But, as good as parts of their time together might have been, it doesn’t justify some of the things she does. I don’t trust her, because neither does she respect our agreements, neither does she have an understanding of my child’s needs that is accurate enough.

So, what is my mom’s idea of how to treat autistic children?

First of all, she is very focused on observational behavior in the moment. She doesn’t show any understanding of that the consequences of lack of support and accessibility can surface after the actual situation or after participating in an activity several times. In my network of autistic families (both children and parents), it’s a fairly common trait that autistic people keep up the appearance in school or in public, and then collapse when they come home. There are plenty of testimonials about this delayed reactions out there, but my mom refuses to accept this.

The fact that a lack of accessibility and support consumes a lot of autistic people’s precious energy is something she doesn’t really acknowledge. There are tools to plan activity levels to make sure that there is enough of recovery time, but she obstructs my work with energy management for my kid by not asking beforehand if she can take my kid to an exciting museum or invite people over. She protests when I explain that these kind of activities are demanding and energy consuming to my child.

This brings us to the third point which is that she cares about observational behavior, or how similar to neurotypical it is, and ignores health. Because focusing on observational behavior in the moment and ignoring energy levels and a long term perspective on health means that my kid’s health will suffer.

As a consequence of not paying attention to health, she doesn’t acknowledge symptoms of stress, and instead she’s prone to explaining most problems with a lack of motivation. When an autistic kid is dead tired on a Monday morning and crying because the demand of brushing teeth and putting on clothes is too high, she explains this with that he or she (no other genders exist to her) isn’t being challenged enough. No matter how much information I’ve given her that explains that this can happen when the weekend has been too energy consuming, she doesn’t really believe me.

To some extent she understands the need for predictability, but she doesn’t accept that there is no universal model for this. Autistic people may very often need preparations to get a necessary amount of predictability, but how that is achieved varies greatly between different individuals. I have found ways to prepare my child (and myself) and adjust activities by preparing other people who will participate in them that work great for my kid, but since they are more elaborate than what my mom is used to, she doesn’t respect our ways. This means that she doesn’t fully respect the need for preparations and predictability.

My mom – a monster?

In the beginning of this post, I wrote that my mom lacks what’s often considered an adequate education, meaning she’s not a teacher, psychologist etc. However, the reason for why I’m writing this is because the exact same attitude and ideas are very common among the professionals* I’ve encountered, even those who are trained psychologists, teachers, doctors and what not with so-called proper educations.

As an autistic parent to an autistic child, it hurts me so badly to experience how my child is being disrespected and misunderstood in the same ways as I was as a child – by my own parent. When I see my own words in this post, my mom comes off as a horribel person, and all these issues that I’ve explained here make that true. But as with a lot of people, she’s not only horrible. She can be kind, caring and unconventional in a way that benefits autistic people too. But at the same time she does all these harmful things. This is an important lesson to me and something that I need to remember: people who treat autistic people like shit aren’t evil monsters. They are common people who may have great intentions but that doesn’t make the harm they are causing less harmful.

 


*I’ve made a correction here, before it was ‘experts’ instead of ‘professionals’. Since I consider autistic people to be the experts of autism, I made a correction.

Dear healthy people without disabilities, this is why I avoid you

It’s around five years ago that I fell ill in ME and during these years I’ve had experiences that I never thought I was going to have. One of these is how painful it is to interact with people without chronic illness or disabilities. This is a letter to all of you healthy people without disabilities that I’m hardly in touch with nowadays.

Dear friends, family and aquaintances outside of the chronic illness and disability world,

I know I hurt you when I don’t show up for gatherings, when I don’t want to talk on the phone and when I don’t always reply to your texts and emails. The main reason is that I can’t fit interacting with you in to my very limited life, and most social situations are inaccessible to me. I won’t apologize for that, because the inaccessibility is not my fault.

However, I want to explain something to you. My silence isn’t only because of lack of ability and accessibility, it also stems from the pain it causes me to interact with you. Everything in my life is affected by my disease and my disabilities but to you it seems like I’m supposed to be the same person, just in a wheelchair. But you see, when you talk about what you think are causal, safe subjects, I’m reminded of how small my life has become. I don’t know if the winter was cold because I can’t go outside. I don’t know if I like the new ice cream at the beach café, because I can’t go to the beach and I can’t have ice cream. And I don’t know what I think about the new book from the author I used to love because I couldn’t focus enough to finish it.

When you try to show me that you care about me by saying that you hope I will get well soon so we can get together again, I’m reminded of that there are no good treatments for my disease and that you don’t seem to understand that at all.

When you ask me if I need help with something but demand that we talk on the phone in order for me to get that help from you, I’m reminded of that you don’t get that talking on the phone can make me so ill that I can’t be around my child that day.

Having ME means living in a parallel world, a world that is more bizarre than you can ever imagine. It means having a severe disease that most doctors choose to not know anything about, a disease with a huge stigma created by fraud ‘scientists’. It means not only fighting for my life everyday because of the disease, but also fighting due to the harm caused by fake science and healthcare professionals who believe I’m ill because of ‘false illness beliefs’.

I don’t expect you to understand this, but as long as you don’t respect what you don’t understand I can’t be around you. It’s too painful to be reminded of everything that was taken away from me.

The Ambivalent Fear

Content Notion: Death

 

Love and loathe is mixing. Swirling, tangling, confusing me.

I’m scared. I’m furious. Most of all overwhelmed.

Why do I fear losing someone who has hurt me so deeply?

On some level I love you, but I detest what you have done to me and my child.

You try to make me think I won’t survive without you, but you keep making my life harder again and again.

I don’t want you to die, but I don’t want you to keep hurting me like this.

 

Literally Speaking

Over the last years, I’ve realized that I communicate and interpret things more literally than what a lot of people do. As long as I communicate with other people who do the same it works just fine, but communication with the rest of the world is a tiresome project. It causes both stress and a lot of practical problems, and in this post I’m going to explain what it means.

Stress

As an autistic person who also is chronically ill and suffers from a lot of brainfog, I need predictability for a number of reasons. I need to know what’s happening in advance to be able to plan what to spend my energy on, I need to have time to prepare and I need time to adjust my focus. When I interact with somebody who doesn’t make as literal interpretations as I do, I never know what to expect. If we make an agreement about something, I can often assume that we haven’t understood each other but no matter how hard I try to predict what the other person will do or expect, I fail most of the times. This means that I spend energy, way too much energy, on trying to figure out how people interpret what I communicate. I don’t have a lot of energy because I have a disease that literally means that my cells can’t produce as much energy as they can in a healthy person (ME – Myalgic Encephalomyelitis). To this, the lack of predictability causes stress and on top of that, misunderstanding tend to lead to people being angry or disappointed, or pushing me into something that will worsen my condition.

To conclude, interacting with people with a less literal interpretation causes me stress because it consumes energy, I don’t get necessarily predictability and I have to deal with other people’s anger and disappointment.

Practical problems

Practical problems occur mainly because I’m very inflexible due to my lack of health and energy, and because I have a hard time shifting focus. I have to prepare immensely for every single little task, and when somebody suddenly expects something from me that I haven’t prepared for, I can’t adapt as quickly as expected. At least not without worsening my symptoms.

This becomes very obvious in situations where somebody is helping me with something, because when I ask someone to help me I mean that I need help with exactly what I asked for. Nothing more, nothing else. For some reason a lot of people think that they can do way more, or help me in a different way than what I asked for. For instance, let’s say that I ask someone to buy me a bottle of milk. The person says yes but comes home with three bags full of groceries. The person expects me to be grateful, and when I explain that I don’t have room to store all those groceries, the helping person will be disappointed. The person has just caused me a practical problem that I probably don’t have spoons to deal with, and on top of that I have to spend my precious energy on explaining why and deal with the other person’s feelings.

On top of causing me all this stress and practical problems, doing a lot more or something different than what I asked for seems to me like thinking that you know my needs better than I do. I lose my autonomy and have to spend energy that I don’t really have on dealing with practical problems and stress.