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.

 

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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.

Longing for Safety (To Stop Masking)

I’m thinking a lot about masking these days. About how trying to mask my autistic self is the only way I know how to interact with other other people. The truth is that yes, I’m almost always masking when I interact with other people (my kid is an exception) but I’ve never been great at it. I fail, and come off as weird. Not as autistic, not as allistic or in any other way neurotypical. Just weird and unrelatable.

One of the reasons for why I long so much for being accepted and met as an autistic person is because I think that’s my only chance of ever feeling safe around another person, and OMG how I long for that safety. Yes, I mask way less with my partner than with anybody else and yes, my partner is probably the person I feel less unsafe with in the world. However, the masking is still there. The watching of my self, the self-correcting that is constantly driving me into exhaustion. The analyzing and behavior modification that I put myself through is horrible, and I can’t stop. Because if I stop I will do something wrong but not understanding what, and I can’t have that again. I can’t have being blamed for something that I don’t understand, being yelled at or lose another person.

I guess this is a part of why I pull away from people, especially when I’m feeling bad. Masking and monitoring is energy consuming to a point that is hard to describe and therefore most social relationships take a lot more energy than I have. I don’t pull away because I dislike people or don’t want to be close. I pull away because I have to in order to not collapse or hurt someone else.

This is not how I want things to be. I’m very occupied with the idea of what it feels like to feel safe around somebody else and I want it so badly that I don’t know what to do with myself. I long so hard for not feeling ashamed of my fidgety fingers, info-dumping or the fact that I’m easily overwhelmed.

I tried to be openly autistic to some people but had to step into the closet again and it’s creating a new level of self-hatered and shame about everything that is me.