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 we 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.

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