Anonymous Submissions Post #1

Photo by Glenn Carstens-Peters on Unsplash

Anonymous Submissions #1-10

We’ve had an anonymous submission box for a few months now, and have slowly accrued some great submissions of important questions, and we’re happy to answer them all! First, we post them in our associated facebook group. Then, after getting input from our members, we’re sharing them on our facebook page and on this blog as well to ensure that our readers get to see their question answered.

Anonymous Submission 1:

Q: “The self diagnosis link under the announcements is returning Content Not Found. Will someone please confirm the URL?”

A: Here’s a link to our website, which should take you directly to the page with our Self Diagnosis FAQ.

Anonymous Submission 2:

Q: “Have autistic people who can see and hear, but have trouble processing both spoken and written words, been helped by Braille? If there’s no documented case of this, could it be possible?”

A: The general consensus of our community is that we are unsure. One member says that braille stickers on their computer keyboard help them to process, but nobody else who responded has learned to read in braille, so it’s unclear if this is helpful.

Anonymous Submission 3:

Q: “Were any of the fine folks here non-verbal as children? What age did you start speaking?”

A: Loads of members here were, and some still are. Please remember that verbal speech is not the only kind of communication, and all forms of communication are valid. Not everyone will use verbal speech.

I’m assuming you also meant vocal speech as well, which is using one’s voice to make verbal speech (verbal = words, vocal = voice) and that it is perfectly okay for people to never use vocal speech.

Some of our members have said:

  • They didn’t speak until they were almost five, but do use verbal vocal speech now.
  • They are currently nonvocal/nonverbal.
  • They have selective mutism (they are unable to talk in specific scenarios, like when they are stressed or overstimulated, but can speak when they feel well.)

Anonymous Submission 4:

Q: “My child can’t stand the feeling of standing on paper (like to outline their feet) or even to see others stand on paper. Does anyone else experience this?”

A: This is definitely a sensory issue. Some members expressed similar distaste to the texture of paper. Some members suggested eliminating this upsetting stimuli. Several members remarked that anything on their feet is upsetting to them.

Anonymous Submission 5:

Q: “Is there anything one should avoid when self diagnosing? I’ve considered that I may be autistic for upwards of 10 years but I’m just not sure how I would know if I’ve been reading articles or resources that are misrepresenting autistic people and experiences because I’ve done all of this privately and have no one to actually discuss things with. Sorry if this is a weird question.”

A: I think you should probably avoid Autism Speaks posts and pages about autism, and a lot of other large mental health pages and groups, because they are grossly misinformed. Your best bet is to seek out groups like this one and pages, scroll the #actuallyautistic hashtag on social media platforms, and take tests like the “autism quotient” and “aspergers test” etc. for confirmation if you feel it necessary.

Rest assured, self diagnosis is JUST as valid as formal diagnosis. (See question #1 for a link to our Self Diagnosis FAQ.)

One member suggested the Autism Spectrum Quotient test as a way to self-affirm diagnosis.

Comments from other members:

  • “As someone who self diagnosed, be kind to yourself. We always want to downplay our symptoms because we work so hard to fit into society. I spent a lot of time feeling like I wasn’t “autistic enough” and maybe it was just other problems presenting weird or I was overreacting. I did get a formal diagnosis eventually.”
  • “My doctor keeps telling me that adult diagnoses aren’t necessary because it’s too late for ‘interventions,’ and I’m like, I don’t need intervention, I need to be protected from discrimination!”

And one exceptional response read:

“If you’re really concerned about being wrong, relax. It’s not a perfect science. Doctors are wrong constantly. Professional DXs are wrong constantly.

Learn as much as you can, try to analyse your brain and behaviour critically, and make the best determination you can and that’s all you can do.

Diagnoses serve a few purposes:

* Insurance billing
* Getting treatment and supportive services and accessibility
* Understanding yourself and communicating yourself to others
* Finding community

Is your self-DX filling any of these roles? Then great, it’s working! Even if you’re wrong, if it helps you understand yourself better, find community, be better able to explain your needs to others…. It’s doing its job.”

Anonymous Submission 6:

Q: “My best friend got a job in a specialized autism program in a public school. He didn’t realize there would be ABA involved, but there is a little bit. They use a token system for appropriate behavior, but don’t discourage stimming or count it as bad behavior. He really likes the BCBA and says she loves the kids but it struggling with the job because he’s seen on here how bad ABA is. What would you tell him??”

A: I would tell him that if he has an ounce of respect for autistics, he would quit. There are other jobs, wonderful jobs that don’t involve the abuse and traumatization of innocent children. I would link him to the Great Big ABA Resource List, and add him to this group. I would encourage him to be as vocal about the injustice that is ABA as we are in this group.

Members suggested that the friend either speak to a superior about the problematic and harmful nature of the practice, or quit the job and pursue something less harmful.

Anonymous Submission 7:

Q: “Hi, Im sorry if I say something wrong. Im autistic adult, non-verbal, ID with other disabilities. I wondering how people make friends, I feel isolated and don’t have anyone to talk to that can understand how I am. Anyone I interact with tends be ableist or transphobic or something else that I don’t deal well with. Trying make friends that understand is hard. I not met another AAC user, or autistic despite having gone to special school and I’d really like be friends with someone like me. There was local group for adult autistics but they only accepted high-functioning autistics, other group more parent and carer. I don’t understand function label and doesn’t describe me. I feel I’m too difficult for anyone to try because have high support needs and great difficulty understanding words and communication. I have so much help doing anything. So how can make friends and not be so alone? Thanks for reading.”

A: Many of us primarily make friends within online autistic communities! It’s very easy to find kinship in other autistics! Much more difficult in person. There may also be autistic groups that meet up locally to you, or ASAN groups.

Anonymous Submission 8:

Q: “My child is autistic, and at the time nonverbal (not verbally impaired). I have a tattoo of a puzzle piece, then the “I love you” sign in sign language around it (think of the puzzle as a palm). Recently through more research I found out the origins of the puzzle piece. My question is, how bad did I mess up and how would you feel if you saw something like that?”

A: Firstly, let’s remember that puzzle pieces are a symbol of the hatred of autistic people. When I see a puzzle piece, I think of abuse, harm, and murder perpetrated against the autistic community, and of the largest hate group in the world which masquerades as a charity.

With that said, personally, I would be really upset to see this. It would make me feel disgust and sadness. I would feel bad for the child whose parent has that tattoo, which symbolizes hatred, abuse, trauma, and our perceived inefficiencies. And if I’m being totally frank, I’d get it covered up. I would not walk around with a hate symbol tattooed on my body.

Almost all suggestions were saying pretty much the same thing: We know you meant well, but you should cover it up, because it is upsetting and hurtful.

Luckily, the anonymous submitter of this question reached out to us and let us know that they are planning to cover it up! They were very receptive of our responses.

At a later date, we were informed that this person has covered the tattoo and the new tattoo is lovely.

Anonymous Submission 9:

Q: “I don’t understand why ABA is bad? What are specific experiences or examples folks can share? Seeing first hand experiences, not conjecture or opinion. I am the bio mom to a 2 year old, enrolled in ABA, Speech, OT in America, only on private insurance. He does not speak, among other issues.”

A: We’ve given this submission it’s own entire post, here. Take a look!

Anonymous Submission 10:

Q: “I’m wondering how to help my daughter with organising daily chores. I don’t like the idea of a rigid list eg. Monday put washing in the machine etc. My daughter has been asking for some time now for a list as a result of me being frustrated that I don’t get enough help. My main concern though isn’t about me feeling like ‘Cinderella’ I really want to support her for the future because I am worried that she may not cope well with independent living. I’ve been struggling to write a list because I don’t want to come across as dictatorial. If anyone has any ideas for how I can best support her, I would be very grateful.”

A: This post also got it’s own entire blog post.

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