When the System Is Rigged Against You: Social Services and Ableism

Content: This post includes descriptions of ableism, mentionings of violence and an example of ABA

 

A couple of days ago I wrote about me and my partner being reported as bad parents to child protection by my mom. This happened for a number of reasons. One of them was because my mom wanted revenge for me not letting her control me, another was because my mom is not well herself. I suspect early onset dementia but it can be something else too. She has done more than one weird thing (not only to me) altely and it makes me and other people around me thinking that she has an altered sense of reality. However, that’s not what I want to write about.

There won’t be any investigation of us this time, but the thing is that where I live, parents of autistic children are sooner or later reported to child protection. This has increased a lot over the last 5-10 years and is connected to political changes. The country I live in is becoming increasingly hostile to all disabled people, partly as a consequence of political decisions. Different kind of supports are being cut down, healthcare and schools are becoming more and more inaccessible and on top of this it’s more and more socially accepted to be very condescending and hostile towards disabled people in general. Healthcare professionals, politicans and teachers are openly hating us, because it’s almost only disabled people who calls it out. Most other people don’t care about ableism. Most likely, I will be reported again by my kid’s school and at that point they will see that we have been reported before and that will cast suspicion over us.

Being reported as a bad parent to an autistic child isn’t something that happens without a context, and this context is important to understand. A lot of the parents I know have been reported and investigated for demanding reasonable accommodations for their kids in school before sending them there. Others have been reported because somebody who is employed to provide some kind of support doesn’t understand what it’s like to be autistic and thinks that sensitivity to harsh clothes, loud noises, a lot of food and too many people at the same time is a sign of parental neglect. A lot of the people reporting parents of autistic kids are professionals who are supposed to be experts on providing certain services, but who are so misinformed about autism that they do real damage.

If child protection services decide that they should investigate you, the misinformation-pattern continues and turns into something very harmful. Sometimes they actually do know a lot about autism and then things work out okay, but very often they don’t. Sometimes they demand to speak to the child but denies the child accessible forms of communication. If the child can’t answer their questions, they don’t understand that it’s because of the denial of AAC but instead thinks it’s because of parental neglect. Sometimes they decide to observe the family in their homes, meaning that one morning a stranger shows up to sit and observe your morning routines. The fact that a lot of autistic children get extremely stressed out by having a stranger in their home is something that isn’t taken into consideration, because remember – these people lack knowledge about what it’s like to be autistic.

I know families who have been offered “help” from child protection after they have been reported because the kid suffered a burn-out from lack of support and accessibility in school. This “help” doesn’t mean that a social worker goes to school and tries to make things better, which would be real help. This “help” means that the family has to go through a number of classes and sessions on how to be better parents. Once again, this is not designed to teach parents to give good support to their kids as the autistic people they are, but to pressure their kids to go to school by removing everything that they like in life and declare that the kids have to go to school to get it back. Very often it includes toys, communication devices and so on. Yes, straight up ABA style. We are talking about “help” that means that you should deny your autistic child support and instead try to make them pass as more allistic.

Being investigated by child protection as a parent to an autistic child means that either you play along, do what they say and let them harm your kid, or you resist harm and risk having your kids taken from you and put in institutions that will be straight up violent (to be honest, even if you play along and do everything they say, they can take your kid and put them in an institution anyway). It’s a dilemma and as a parent to an autistic kid, I think about it way more than I wish to. The system isn’t designed to protect autistic people, it’s designed to try to make us appear more allistic or to slowly and painfully get rid of us.

When I had published the previous post, I got a couple of comments that I have chosen not to publish. One of them was from a social worker who gave advice I never asked for about how to handle being reported. This included things like to cooperate and say yes to all help offered. Besides from the fact that I have a serious disease myself and can’t show up for appointments and weird classes outside of my own home, this kind of attitude from social workers is a part of the problem.

Where I live (not in the UK or US), both the investigations and the corrective “help” tend to not be very suitable for families with autistic kids and/or adults. It’s actually harmful stuff. Saying that I should just go along with everything means that you say that I should just let people harm my kid and myself. This is not the kind of “help” I need. It’s not supportive.

What I need is people recognizing the power structures in this.

What I need is social workers daring to ask yourselves if your practices are really ethically okay and safe for all the people you put through them.

What I need is for you to listen to disabled people in general, learn about ableism and that you dare to take a stance and work for practises that aren’t harming disabled people.

I don’t need more paternalism. I don’t need social workers showing up in my blog giving me advice despite the fact that I have only given you tiny pieces of information, meaning you are giving advice on something you don’t really have enough information on.

 

Being reported as a bad parent to social services

Content: This post is about ableism and the risks of violence that autistic people face.

 

My mom has reported me and my partner to child protection (social services). Her report is full of lies and for now, they won’t do any investigation of us. But I’m not relieved.

There are so many things behind my mom’s actions right now (she’s not well herself), but still, this is the kind of attack I feel like I will never get over. Since this happened a couple of weeks ago, I’ve changed regarding how I act and think as a parent. Instead of acting as if we had lots a time ahead with our kid, I’m thinking that this is borrowed time that can suddenly end at any point. I find myself pondering how I can teach my kid the best kind of strategies to communicate their support needs as if it’s a hurry for them to learn this. Before my mom’s reporting of us I thought that we had plenty of time and this was something that we would work on in a slow pace, but now I think that my kid can be taken away from me without any warning and be placed with people who don’t understand them.

I can’t focus on many other things, so a lot of the stuff I used to care about is being neglected. All I can think about is how I can help my kid to cope as good as possible if they suddenly are picked up by the police and placed with other people. This probably sounds overly dramatic but as a disabled and very ill parent to a disabled kid with a relative who’s actively trying to take my kid away from me, the threat is real.

I wish people could understand how damaging ableism is. That all the negative things you say about disabled people affect how child protection views and judges us. As a disabled and chronically ill parent to an autistic kid who can mask sometimes, people think that I create my kid’s disability with my own “false illness beliefs” (that’s how people think of my diseases).

Where I live, children who are taken away from their parents are very often put in institutions (unless they are very young, like toddlers). These institutions are highly criticized for using violence against children and not understanding their support needs. This means that my kid is in real danger because of my mom and ableism. If people like my mom (who works with autistic children) can think that we’re making up my kid’s autism, guess what a lot of other people also will think? Exactly the same. Framing autistic people as people with a behavioral disorder that can be cured with behavioral therapy has consequences beyond what most people can grasp.

I’m scared. Really, really scared.

As Long As It’s Controversial to Treat Autistic Kids with Respect, We Need Autism Acceptance and Appreciation

April is coming up and that means a lot more attention on autism, since April 2 is World Autism Awareness Day. I was thinking about the difference between awareness and acceptance and decided to share an example of why we need acceptance. Warning: This post will include mentioning of harm and ABA.

 

If you are a parent to an autistic kid, try treating your autistic kid with basic respect and tell people about it. Simple things like don’t put your autistic kid(s) through sensory hell, help them communicate by giving them access to AAC, assume competence, protect them from harm and that sort of stuff. Nothing fancy, just basic parenting. Then, wait for the reactions. For me, doing this leads to two kinds of reactions:

1) Some people call me a horrible parent, because how will my kid ever have a chance to learn to appear more “normal” when I don’t engage in interventions with that aim?

2) Some people think it’s great and that I’m a great parent.

Reaction number one is awful for a number of reasons, the main one being that it shows how so many people think that interventions aiming at trying to make your kid appear less autistic is an acceptable and reasonable thing to do. That’s horrible because it means that a lot of kids are being put through ABA and similar interventions that have harmed so many autistic people. Reaction number two is quite nice, because it means that there are people who think that autistic children should be brought up with respect and basic protection from parents and other adults. However, no matter how happy reaction number two makes me, something is very troublesome with both these reactions – the fact that there is a total lack of a third kind of reaction:

3) So you’re a parent who commits to basic parenting. What’s special about that?

I’m thinking about this because I’m thinking about how to deal with April and all the Autism Awareness, because I think this is a great example of why we need Autism Acceptance and Appreciation, not Awareness. Ponder this:

 

It’s controversial to treat you autistic kid with respect.

It’s controversial to protect your autistic kid from harm and teach them that they are fine, just like they are.

It’s controversial to point out their humanity.

 

I can’t see how Autism Awareness ever will be a solution to this. People are aware that autism exists, but it isn’t stopping anybody from thinking that parenting autistic kids should be about harming them with normalizing interventions. Autism Awareness is obviously not preventing schools from denying kids an education and punishing them for being autistic either. Being aware of that autism exists doesn’t seem to be doing much for autistic people.

However, Autism Acceptance has a much better chance of focusing on accepting autistic people, just as we are. Autism Appreciation has a chance to give us the right to feel good about ourselves, as the autistic people we are. With more acceptance and appreciation, maybe one day it won’t be controversial to be respectful to autistic people of all ages anymore.

 


This post is based on this twitter thread.

Autism Professionals Hijacking My Thoughts

As a parent to an autistic kid, I read a lot about different strategies to make the world more accessible to my kid. About different ways of meeting sensory needs, create predictability and giving my kid the best possible opportunity to understand the world. To relieve stress and create recovery time. As much as possible, I read about autistic people’s experiences, needs and ways of meeting those needs, but sometimes I read something from an autism professional who isn’t autistic, or isn’t writing from an autistic point of view. And I hate it.

Not because all of it is totally bad, but because most of the times, the values permeating it are horrible. Besides from not working the way these NT autism professionals think their tools and strategies work, there’s very often an idea that the less autistic the person appear, the more they can claim success. As an autistic person myself, it hurts me badly when I have to be confronted again and again with their notions of being autistic as something bad. No matter how much they claim that they aren’t trying to cure autistic people, the idea that support or help should be something that makes autistic people seem as little autistic as possible is taken so for granted that they don’t need to spell it out. In many cases, they claim the opposite but then when they explain how their strategies and tools help, success is measured in the person appearing less autistic.

Not only is this a waste of my energy because it won’t help my kid, but it’s also a huge problem because it’s affecting my thoughts and feelings about myself. Their often incorrect ideas about autism are hijacking my thoughts and it makes it more difficult for me to understand myself and my kid.

For instance, let’s take this idea that autistic people need a huge amount of external, totally illogically constructed motivation to be able to learn something. Even when I look at tools and strategies that aren’t obviously based on this, I can sense that this notion is somewhere deep beyond what’s being claimed straightforward. No matter how much I know that this isn’t true, I get affected by it. Whenever something is too difficult for me, I start wondering if I’m actually just not motivated enough. I know that this isn’t true but having to see some misunderstandings about autism being reproduced over and over affects me. It hijacks my thoughts.

This is why I think that autism professionals (autistic or not) need to start paying way more attention to what autistic people are trying to communicate, and scrutinize your own values and understandings of autism. It’s not enough to stop doing ABA, in order to create a better world for autistic people autism professionals need to stop reproducing misunderstandings and negative values about autism.

ME/CFS Researchers Don’t Understand Autism

Content: This post includes mentioning of ABA, an autism cure and a lot of ableism.

 

 

Fellow autistic readers, I need your help.

The last couple of months, I’ve been made aware of that some researchers who are originally researching the disease ME (Myalgic Encephalomyelitis), are now interested in autism. This is very troublesome because from what I’ve read, they don’t understand autism at all and their misconceptions can turn out to harm autistic people.

A couple of days ago an article called Treating Autism and ME/CFS: Could One Drug Do Both? was published at the Open Medicine Foundation’s website, and it includes a number of troubling statements. For instance this:

ASD is not chronic fatigue syndrome (ME/CFS) but some similarities exist. Both diseases affect cognition and sensory processing, cause problems with stimuli, cause significant social withdrawal, and are associated with increased levels of oxidative stress, reduced glutathione levels, and a Th2 immune response shift.

The rest of the article goes on as expected, with a number of biomedical facts about autism and ME, but with no further definition or accurate description of what autism really is. From what I can tell, the researcher and/or the person who wrote the article both seem to consider autism a disease defined by a number of behaviors, like mutism and social withdrawl mentioned in the quote above. There’s no sign of any awareness of how heavily autistic people have criticized this understanding of autism. There’s no recognition of all the other aspects of autism, like hyper-empathy. Autism is considered a disease and therefore something bad, and demonstration of less autistic behaviors is interpreted as improvements.

The scores indicated that the children’s social interactions, language, and restricted and/or repetitive behaviors all improved.

Further on in the article, we have parents to autistic children being interviewed about how horrible they find their children’s autism. The parent perspective is of the usual tragedy kind that tends to be standard from Autism Parents, but no actually autistic person is being interviewed in the article.

This is bad. Terribly bad. I fear that the researcher’s misconception about autism and lack of awareness of that historically, attempts to “cure” autistic people have turned into so much harm and will lead to us being harmed again. There are so many testemonies out there of how ABA, the therapy that is still widely used in attempts to teach autistic people to behave less autistic, gives people PTSD. Behaving more like allistic people doesn’t make autistic people less autistic, our brains are still wired the way they are. What it does mean is that autistic people spend a horrible amount of energy trying to fit in and be approved, instead of punished.

I’m devastated by this. I’m autistic and I have ME. I want to be cured from ME but I want to continue to be autistic, because I don’t want to change my personality. For a number of reasons, I’m drained and have very little energy at the moment. I can’t fight this on my own. Those of you who want to protest, please do.