Honoring Our Choices

scattered-minutiae:

The final post in the autistic motherhood series is posted at Autism Women’s Network: Autistic Motherhood: Honoring Our Personal Choices

It was a challenging one to write. My original thought was “I’ll write about the decision to have or not have children as an autistic woman.”  Which turns out to be an incredibly personal and complex topic. You’d think I would have seen that coming, right?

Ultimately, what I concluded, is that each woman’s choice when it comes to parenthood is the best choice for her and each person’s situation is unique. There is no “decision” in the broad conceptual sense, just many individual decisions made for countless reasons and sometimes not for any particular reason at all. I hope that comes across in the article, because I very much want it to be respectful of our choices and of the circumstances that are unique to parenting as a disabled person.

A POSTSCRIPT TO THE SERIES

There’s also something that I wanted to address at some point in this series–something that’s been on mind for months as I’ve been writing about motherhood–but I never found a way to say that I felt comfortable with. Since I’m among friends here, I’m going to just throw it out there as food for thought and hope for the best. 

There are generations of women–my age, older, a bit younger–who grew up undiagnosed and came to motherhood without the knowledge that we are autistic. Being autistic and, for many but not all of us, being disabled didn’t enter into our choice. Thanks to an improved diagnostic process, there are now also generations of younger women and girls who make the decision to have children knowing that they are autistic. And that feels like a double edged sword. Yes, they have the advantage of knowing about how being autistic may affect their parenting ability. My concern is that they may also feel that being autistic somehow automatically disqualifies them from being a good parent or from being a parent at all. read more

This looks like it was an interesting event. Did any of our followers attend? Thoughts?

autistiel:

HelpTalk is a free PECS app currently for Android devices only

+ Comes with a default profile (preview) that includes a lot of basic needs
+ Ability to create custom profiles, including uploading your own pictures for them (Note: you need to make an account on their website for this)
+ Multiple language support
+ Ability to choose TTS engines and voices (Some of the ones they list are not free and must be bought before use)
+ Talk button lets you type any sentence to speak
+ Large Yes/No buttons for those with reduced dexterity
+ SOS button that can be enabled to send a text message to a designated number in an emergency, also the option to include location information with the message

It was clear in our interviews that people with ID/DD are interested in working in the community and are very concerned about making so little money. One woman related a story about how after she got her job in the sheltered workshop she promised her family that when she got her first paycheck she would take them out to dinner. In her words “nothing too fancy.” She related how surprised and sad she was when she received that first check – for 38 cents. All of the individuals we interviewed were fully aware of piece rate wages compared to hourly wages.

Sesame Street, This is an Autistic Speaking

ollibean:

Sesame Street, you are all about diversity. Autism is part of neurodiversity. You accepted me even before I learned the word acceptance. Don’t do what Autism Speaks does and exclude us. Don’t partner with an organization that silences us. We are proud of who we are and we want all kids to feel this way. We want all children to know that Sesame Street is a safe place to be who they are, that acceptance is all around.
Please, listen to us and listen to the little me from many years ago, saying thank you for your love.
- See more at: http://ollibean.com/2014/04/08/sesame-street-autistic-speaking/#sthash.2qpzoTJB.dpuf

otipemisiwak:

Also since I’m Indigenous it’s important that there be visible disabled Indigenous people since the majority of things that discussing disability are white-centered. The whole issue of how autism is encountered from an Indigenous perspective is something that I want to know more about and how it’s viewed. Maybe I’m not seen as defective like I am in the western, medical model?

allismyells:

shout out to all the:

  • physically disabled and chronically ill autistics
  • mentally ill autistics
  • autistic people of colour
  • trans and nonbinary autistics
  • queer autistics

(✿◠‿◠) ♥ you are important and beautiful and so very loved. 

neurowonderful:

(Image description: A partial screenshot of a blog post. The title reads “How I reduced screaming and verbal stimming in my child with autism”, and below that is a colour photograph of a hand holding a rectangular plastic “clicker” device.)I think I may have mentioned this blog post, and the sadness and confusion I felt when I came across it, in one of my videos. This screenshot is from the blog of an “autism parent”. Yes, that is a clicker. Yes, she is encouraging the use of animal training methods on Autistic children. Yes, she considers any kind of vocal stimming, not just screaming, to be a “bad behaviour”. To top it all off, her blog banner reads, “Discovering SOLUTIONS to the Everyday Problems of Living with AUTISM”. Here is an excerpt from her tutorial on how to train your disabled child like a dog to have a “Quiet Mouth”:

Third, I sat back and watched my child. Since he was making bad noises, I decided to reinforce Quiet Mouth (i.e., lips together, no sound). Whenever he had a split second of Quiet Mouth, I immediately tagged (made a click-sound with the device) and handed over a treat. Every time his mouth was Quiet, I tagged (clicked) and treated. Soon there was much more Quiet Mouth behavior. When doing this it is important to ignore and pay no attention to vocal stims or screaming. Do not look at the child, do not speak to him/her or explain. Just say nothing, and immediately tag and treat as soon as there is even a split second of Quiet Mouth. You can also tag and treat a child for any appropriate vocalizations. If he/she says a nice word, or makes an appropriate comment, then tag and reinforce that. Your goal is to increase Quiet Mouth and appropriate vocalizations.

And sadly, as bad as this attitude and treatment of Autistic children is, this is a relatively tame example when compared to the other unethical treatments, therapies, and methods of discipline that Autistic children are being subjected to every day (all in the name of making them appear less obviously Autistic). This is why we need Autism Acceptance Month and not the fear-mongering, negative, misinformed “awareness” that Autism Speaks and its allies are pumping out this April.
We need acceptance because Autistic children should be loved and accepted wholly and completely for who they are, not hurt and mistreated in their parent’s frantic search for a “cure”. Because Autistic people deserve to be treated with respect and listened to, not silenced and forced or coerced to conform to an ableist, non-disabled ideal. Because Autistic children need accommodation and understanding to live healthy, happy lives, not sketchy “treatments” and intensive, soul-crushing “therapies” to try to make them appear more neurotypical and less Autistic.
For more information on ASAN’s Autism Acceptance Month, see the about page on the website here: http://www.autismacceptancemonth.com/about/

neurowonderful:

(Image description: A partial screenshot of a blog post. The title reads “How I reduced screaming and verbal stimming in my child with autism”, and below that is a colour photograph of a hand holding a rectangular plastic “clicker” device.)

I think I may have mentioned this blog post, and the sadness and confusion I felt when I came across it, in one of my videos. This screenshot is from the blog of an “autism parent”. Yes, that is a clicker. Yes, she is encouraging the use of animal training methods on Autistic children. Yes, she considers any kind of vocal stimming, not just screaming, to be a “bad behaviour”. To top it all off, her blog banner reads, “Discovering SOLUTIONS to the Everyday Problems of Living with AUTISM”. Here is an excerpt from her tutorial on how to train your disabled child like a dog to have a “Quiet Mouth”:

Third, I sat back and watched my child. Since he was making bad noises, I decided to reinforce Quiet Mouth (i.e., lips together, no sound). Whenever he had a split second of Quiet Mouth, I immediately tagged (made a click-sound with the device) and handed over a treat. Every time his mouth was Quiet, I tagged (clicked) and treated. Soon there was much more Quiet Mouth behavior. When doing this it is important to ignore and pay no attention to vocal stims or screaming. Do not look at the child, do not speak to him/her or explain. Just say nothing, and immediately tag and treat as soon as there is even a split second of Quiet Mouth. You can also tag and treat a child for any appropriate vocalizations. If he/she says a nice word, or makes an appropriate comment, then tag and reinforce that. Your goal is to increase Quiet Mouth and appropriate vocalizations.

And sadly, as bad as this attitude and treatment of Autistic children is, this is a relatively tame example when compared to the other unethical treatments, therapies, and methods of discipline that Autistic children are being subjected to every day (all in the name of making them appear less obviously Autistic). This is why we need Autism Acceptance Month and not the fear-mongering, negative, misinformed “awareness” that Autism Speaks and its allies are pumping out this April.

We need acceptance because Autistic children should be loved and accepted wholly and completely for who they are, not hurt and mistreated in their parent’s frantic search for a “cure”. Because Autistic people deserve to be treated with respect and listened to, not silenced and forced or coerced to conform to an ableist, non-disabled ideal. Because Autistic children need accommodation and understanding to live healthy, happy lives, not sketchy “treatments” and intensive, soul-crushing “therapies” to try to make them appear more neurotypical and less Autistic.

For more information on ASAN’s Autism Acceptance Month, see the about page on the website here: http://www.autismacceptancemonth.com/about/

autisticfandomthings:

Seeing as there’s been shit going around recently about self-diagnosis (yet again) and most of it is from a pretty US centered view (not that there’s anything wrong with that, the majority of the English speaking community on tumblr is american), I just think a few points need to be made.

The US healthcare system is fucked, and that puts additional barriers into place for self-diagnosed people wishing to get an official diagnosis. But there are serious barriers in other places too. Having a decent healthcare system doesn’t necessarily mean that it’s easy to get a diagnosis. (all of these also apply in america too, I think)

This is of course, going to be rather UK centric, I am aware that the situation in places like france is significantly worse (look up “le packing” tw: abuse)

Barrier 1:

Ignorant GPs/family doctors. GPs in the UK (and I believe the UK has some of the most highly trained doctors in the world) will have had at most, a 1-2 hour lecture on autism, which may have been full of misinformation and stereotypes (see, my uni level psychology course showing a video of rain man as an example of autism), up to 10-20 years ago. Their awareness of autism will likely be restricted, to stereotypes and a collection of wrong ideas. You might be luck and get someone with some general psychological knowledge or training, but chances are their response will be to pull up a list of symptoms on their computer. The NAS site even talks about “presenting your case”, which isn’t really a great thing to have to do.

To give an example of this my boyfriend (who is clearly autistic, this was agreed upon by the guys who diagnosed me based on what I told them about him) doesn’t have a diagnosis yet because of the ignorance of his GP. We said we thought he was autistic,  she brought up a list of autistic symptoms in children aged 2-5 (my boyfriend was 24 at the time) and stated that she didn’t think he was autistic because “you seem to have normal intelligence” and “these things are always picked up in childhood anyway”. She then went on to be viciously nasty when he got upset trying to explain.

There are even more problems if you are female, black, or trans (especially trans women, the male brain theory of autism is so, so damaging). Doctors think people in these groups can’t possibly be autistic, despite that fact that a really high proportion of trans people are autistic. And black people are as likely to be autistic as white people, and women are just under diagnosed.

Barrier 2:

Not all diagnosis will be accepted. If you don’t manage to get past the GP, you could opt for a private diagnosis, which will be about £3000. Which is a lot of money. Basically no one has private insurance here because the NHS is usually so good. And even if you get a private diagnosis there are lots of places that will only accept an NHS diagnosis.

Barrier 3:

Negative impacts of a diagnosis. If you have a paper diagnosis it should not be held against you, legally. But realistically, if you end up in something like a custody battle, it will be. Without a doubt. If doctors have so little training in autism, judges are even more likely to believe lies like “autistic people don’t have empathy”. This will affect their judgement.

Barrier 4:

Wait times and lack of services. If you do get a referral, it could be months and months before you actually get to see a qualified specialist. My boyfriend has at this point been waiting nearly a year from the time he managed to get a referral. I was lucky and only had to wait two months. Even if you get a referral the specialist centre may not be in a place you can easily get to.

So, this means that even if you live in somewhere with a decent health care service, it can still be really hard to get a diagnosis. And frankly most people who self-diagnose are right. And guess what? The NHS supports self-diagnosis. “Getting a diagnosis of autism in adulthood can be a mixed blessing and some people decide that they are happy with self-diagnosis.”

autisticadvocacy:

Image is the rainbow heptagon used in the ASAN logo, with a rainbow silhouette of six people together near the center and overlapping with the logo. The text reads “Inclusion is for everyone,” with everyone larger than the other words.

autisticadvocacy:

Image is the rainbow heptagon used in the ASAN logo, with a rainbow silhouette of six people together near the center and overlapping with the logo. The text reads “Inclusion is for everyone,” with everyone larger than the other words.