Want to help me with my research into the voices of autistic adults in autism discourse?

So, hey, as you may or may not know, I am currently doing my MA dissertation on how expertise is incorporated into the autism discourse in the UK.

I have collected data on whose voices are currently being listened to, but now I would like the views of autistic adults to compare what we want with what the designated experts are pushing for.

So, for the next two weeks (until the end of July 2018), I’m running a Discord server for autistic adults from the UK* to discuss what we want, in terms of legislation and services, from the government and charities.

*So, basically, you have to be 16+ and have spent a significant of time living in the UK as an adult in the past decade.

If you meet these criteria and want a link to the Discord, send me a message. It can just say “Discord?” and I will send the link. Obvs, it can’t be an anon message, though.

Here is more detailed info on the server:

This server is for discussions of what UK autistic people would like to see in terms of legislation and services provided by the government and charities for autistic people. This discussion is part of a study on lay expertise and autism in the UK as part of an MA in Sociology and Social Research at Newcastle University being undertaken by L.C. Mawson, the creator of myautisticpov.com.

The server will run for two weeks and participants are free to join and leave the server as they please. If you would like to withdraw from the study completely, including removing your contributions to the discussion, you can contact Mawson at l.c.mawson@ncl.ac.uk to do so.

Your data will be anonymised, with only your nickname on this server being associated with your messages (right-click on your name on the user list on the right-hand side to change your nickname), not your real name.

This study is only looking at the experiences of autistic adults in the UK - this includes adults anywhere within the diagnostic process including those who are self-diagnosed and UK citizens who are currently living abroad - so please do not enter this server if you are not living in the UK, or are not an autistic adult (16+).

If you’re not eligible to participate, signal boosts would still be massively appreciated!

ASAN Letter to ASHA On The Right To Communicate

July 2, 2018

This letter is available as a PDF here.

Dr. Elise Davis-McFarland, Ph.D., CCC-SLP, President, Past Chair, Committee on Committees Meher Banajee, Chair, ASHA Ad Hoc Committee on FC and RPM Marie Ireland, Vice President for Speech-Language Pathology Practice, Board Liaison Diane Paul, ASHA Director, Clinical Issues in Speech-Language Pathology, and Committee Ex Officio American Speech-Language-Hearing Association (ASHA) 2200 Research Boulevard Rockville, MD 20850-3289 USA

Via electronic mail:  dpaul@asha.org

July 2, 2018

Re: ASHA’s Proposed Position Statement: Rapid Prompting Method (RPM)

Dear Drs. Davis-McFarland, Banajee, and Paul, and Ms. Ireland:

We write to voice our concerns about the recently issued proposed position statement of the ASHA Ad Hoc Committee on Facilitated Communication (FC) and the Rapid Prompting Method (RPM) (“Committee”), which the ASHA Board of Directors established in summer 20171.  We are deeply concerned that this Committee has failed to engage meaningfully with stakeholder communities, including and especially the self-advocate community. This lack of communication with the individuals most affected by the decisions of the Committee has resulted in a proposed position statement that will dramatically undermine access to communication supports for individuals who have no equally effective alternate forms of communication. As a result, the Committee stands to dramatically undermined ASHA’s mission of “making effective communication, a human right, accessible and achievable for all.”

As autistic self-advocates dedicated to advancing the rights of all people with developmental disabilities – including non-speaking people – we are committed both to ensuring access to a wide range of effective communication supports and promoting research on effective supports. We do not take positions on individual communication support methods or techniques. Nevertheless, we believe each non-speaking person has a right to use the method of communication that works best for them, as determined by an individualized analysis. Moreover, we believe that no single method of AAC will work for all non-speaking individuals.

The Committee’s process has deliberately shut out input from people from disabilities.

When the Autistic Self Advocacy Network attempted in 2017 to learn more about the Committee and offer input, we were denied the opportunity to speak directly to the Committee members or even learn the identities of Committee members. We are also alarmed that to our knowledge, the Committee has never, and never plans to, solicit input from people who use the methods of communication under review, or those who formerly used these methods of communication and then graduated to independent typing.  The Committee has also never solicited input from a self-advocacy organization of any kind.

The Committee’s failure to engage with the community is particularly alarming considering the potential harm that may result from a process that fails to account for the experiences of self-advocates. Due to ASHA’s significant influence over speech-language professionals (SLPs),  we are aware of cases in which educational institutions have alreadyrefused to provide support for students’ most effective form of communication, citing ASHA’s proposed position statement. The likely result of these denials will be isolation from the general education classrooms, exclusion from the general curriculum, and protracted due process proceedings. We are aware of many students who, when denied access to their most effective form of communication, have been forced to move to another district or leave the school system entirely. Denial of communication supports may also result in lack of access to transition-related services, institutions of higher education, and independent living supports. Loss of an effective form of communication can also result in trauma, isolation, and frustration that may in turn lead to escalating “behaviors” and increasingly restrictive interventions.

The Committee’s blanket statement that specific forms of communication are per seinauthentic robs us of the right to communicate.

The Committee’s proposed statement includes the blanket statement that “the use of … facilitator-dependent techniques … is not consistent with the communication rights of autonomy and freedom of expression because the messages do not reflect the voice of the person with a disability but, rather, reflect the voice of the ‘facilitator.’” None of the studies cited by the Committee actually supports such a generalization, nor could they, because no such study ever claimed to evaluate allfacilitator-dependent techniques or all users of any specific technique.

Evaluations of the authenticity of communication should be conducted on an individual basis, taking into account a variety of considerations. Such individualized analysis is not unprecedented.  For example, the medical community has a history of engaging in meaningful discussions on how to evaluate communication by individuals who, due to motor concerns, cannot communicate effectively without the assistance of a facilitator. 2

The proposed statement does not meaningfully address the fact that no other forms of augmentative communication, including those proposed as alternatives, have been evaluated using message-passing or similar tasks. Nor does it acknowledge that some of the proposed alternative interventions – such as Applied Behavioral Analysis – have been found to have no discernible effects on communication ability3, also rely extensively on prompting, and are not themselves a form of augmentative communication. Attempting to wholesale deny the authenticity of a form of communication, regardless of the evidence available with respect to a specific individual, and then assert that unrelated interventions are “alternatives,” is unjust and logically inconsistent.

ASHA’s proposed position statement prevents a false choice between FC, RPM, and other communication supports.

The proposed statement claims, without support, that use of one form of communication necessarily “supplants” access to other techniques. This inaccurate claim is contradicted by the experiences of countless actual AAC users, many of whom use of a variety of different forms of communication, sometimes simultaneously and sometimes at different times and for different purposes. People who use letter-based communication techniques, such as RPM or FC, often also use methods such as indicating choices among options, pointing to multiple-choice answers or word/symbol banks, yes/no signals, PECS, tablet-based AAC apps, sign language, independent typing, and spoken words or sounds to communicate at different times.

To the extent that people with communication-related disabilities do not use the communication methods that the committee proposes as alternatives, it is often because those methods do not work for those individuals. Cutting off access to one form of communication, in the absence of other methods that are equally effective for that individual, is unethical and harmful. Although we agree that far too many non-speaking people have not been offered communication supports that are evidence-based and effective, taking away communication options is not the answer. Rather, we urge ASHA to take seriously the evidence that there is a critical unmet need in school districts across the country for effective, wide-scale implementation of robust AAC options, and to focus its efforts on meeting that need.

The Committee’s proposed position statement inappropriately equates absence of peer-reviewed studies with evidence that an intervention is ineffective.

Although we support formal research on communication, a significant number of communication methods have no supporting body of formal research pertaining specifically to that communication method. Rather, SLPs may recommend communication supports based on other sources of evidence, including general research on motor planning and language learning, combined with individualized evaluation of the individual in need of communication supports.4

The Committee’s proposal to restrict SLPs’ use of a communication method, based entirely on the absence of message-passing studies supporting the specific method in question, therefore threatens to set a dangerous precedent that may obstruct individuals’ access to a wide variety of communication supports. This precedent is especially threatening to those who have discovered communication methods that are highly individualized and thus not amenable to formal academic research.5

Conclusion

ASAN therefore recommends against adoption of the proposed position statement of the ASHA Ad Hoc Committee on Facilitated Communication (FC) and the Rapid Prompting Method (RPM). Adoption of the proposed statement would dramatically undermine the right of all people to the individualized supports they may need in order to communicate. 

Sincerely,

Samantha Crane, J.D. Director of Public Policy, Legal Director Autistic Self Advocacy Network

“Talking to your kids about their disability is much better than letting them find out about it from googling what they overhear.”

One reason why some parents think it is “helpful” to hide information about a child’s disability from them is because they don’t want to “label” the child. They think “labeling” the child with a disability diagnosis is automatically harmful. BUT. If you don’t share with the child accurate information about their diagnostic label and what it actually means? And if no one around them knows about their disability diagnosis? THEY WILL STILL BE LABELED. Except, instead of being described with a clear, honest, non-stigmatizing, accurate explanation of the diagnosis and what it really means or doesn’t mean, others will slap them with labels like these:

And eventually the child may learn to believe these labels.

Because, whether they know about their diagnosis or not, the child still has a disability. The disability still creates certain specific challenges in things that seem easy for everyone else. Without accurate information about what’s really going on with them, they will come up with other explanations for these difficulties. And often the other explanations they come up with will be a lot worse than just learning the truth in a calm, factual way. 

Acknowledge their real challenges. And acknowledge that they may have many strengths not affected by the disability. Also acknowledge that many people with the same disability find creative ways to compensate for it, adapt to it, work around it, etc. They may learn many helpful strategies from peers who share the same disability as them (both people the same age, and also older adult role models). And they might also come up with ideas of their own. Some of these strategies might already be routine for them. Other strategies can be added as time goes on and will quickly become routine also.

And acknowledge that they may have many strengths *because* of the disability

And acknowledge that they may have many strengths *because* of the disability

Hey if you’re ever embarrassed by any scars you have just remember that I have a three inch scar down the length of my forearm from where I scratched myself on a microwave while cleaning

Hey reblog this with your odd scar stories cause I think it’s cute and I wanna read em

I got a scar on my lip when I was 4 cause I slipped in the bathtub and my top teeth went through my bottom lip then when they were gluing my lip back together I jerked away now I got a scar.

Weird L shape on my arm from a waffle iron

Slice down my palm from when I was drunkenly showing off my knives, dropped one, and thought it would be a smart idea to catch it midair. By the blade. 

One of my worst scars was from trying and failing to catch a falling cat. (The cat was fine.)

Dent in my forehead from hitting my head on the pointed end of the metal banister in kindergarten when I bent over to pick up my hat.

square burn just aboveo my right elbow from hot glue. Don’t lift it above your head and try to glue shit to the ceiling. Gravity works.

Scar under my chin from when I was 5 or 6, I tripped over a doorframe at school, and somehow managed to pretzel myself and bring the buckle on my sandal up to my face and cut it bad enough that I needed 2 stitches.  I have never been that flexible before or since.

I have a scar in my palm from where I accidentally stabbed myself with a double pointed knitting needle Haven’t used them since

Scar on the rood of my mouth from when I was playing the recorder in primary school music class and another 7 year old tried to silence me by slapping her hand over the end of the instrument.

A one inch scar in the center and a little above my right eyebrow from when a skinhead “accidently” elbowed me at a punk show. It was right after my sister grabbed the guy and told him to stop being a dick. My sister calls it my Harry Potter scar.

V-shaped scar on the inside of my left ring finger from a pair of kitchen shears - I was cutting the stems off some flowers I bought my Mom and showing off what I’d learned in my lame-ass “floral design” elective at school.

I have a horizontal line next to my nose from when I scooped up one of our cats too excitedly and scared her. One of her claws got caught in my face near my ear, but that didn’t scar. Only the nose-adjacent scratch from the other paw did. Wtf.

(my partner had to come disentangle her claw from my face. The cat and I were both too shocked to do anything.)

5cm long scar on the fleshy part of my forearm just below my right elbow.  Got it carrying books into class.  Yep, THAT big of a nerd. Arms full of books met broken glass louvre.

Probably my most ridiculous self-inflicted scar: A wedge-shaped one where I almost took a fingertip off, trying to poke a hole in something with a scissors blade.

Most ridiculous one not directly caused by my own actions: I got hold of a screwdriver and was playing with it as a toddler. So, my biodad panicked and yanked it away from me, afraid I was going to hurt myself–and in the process it made a pretty good gash in one cheek. 0_o That scar has barely been visible for a long time, but there’s still a line there.

gots a line across my forehead. a doc seed I gots 5 feet long hair and instead of shaving my head peeled my scalp back to perform a surgery.

The surgery was needed cause I banged my head on a marble floor (meltdown) and the floor won.

Is a very good answer. The link is kinda not accurate - but since autism is a spectrum of traits is hard to pin down (specially since we struggles lots when being held).

Seizure First Aid. 

Learn it. Share it. Know it. Use it. 

100% correct medical information on tumblr for once; also consider calling 911 if you don’t know how often the person has seizures and ESPECIALLY if the seizure has lasted 5 minutes or more (which is why the watch is critical)

I have epilepsy so making sure the word is out on how to help people who do have seizures means a lot to me.

My mum’s epileptic, and I do most of this, but I was taught to keep her on her side by holding on to an item of clothing so she doesn’t roll over and choke on her tongue.

Also, epileptic people are usually disoriented when they come back to consciousness, and sometimes don’t know where they are, so it’s a good idea to explain where they are and that they’ve just had a seizure.

My late GF Dani had much seizures (she passed away from a bunch of seizures in a row what stopped her heart for too long). One thing for the post-seizure care - do NOT tell them anythings. Ask questions of their normal life - name, where they is, etc. Dani would often not knowed stuff for many minutes after - sometimes not even knowed who was talking at her. Telling her them things would maked it harder to know when she was back aware. Ask questions - don’t give the answers. Is important to know when the person is aware again. If is more than about 15 minutes from end of visible seizure and they is still not able to answer right, let the EMT’s take em to hospital. If nother seizure happens in less than 5 minutes - take em to hospital. If 3 seizures in a row in less than an hour - take em to hospital.

Is not wanting to be crying 10 years later like I is.

— marcandangel.com (via onlinecounsellingcollege)

Not if they are autistic. 

I cannot call you on the phone - I don’t speak or understand when you do. I cannot email you first - my anxiety makes me sit down and cry when I try. I cannot wave first in public - you might not wave back and I will sit down and cry.

Text me, email me, wave to me. I will respond.

I will not initiate any social interaction no matter how well I know you or like you.

I do not even initiate contact with my Mother and she’s the most wonderful person in the world.

Australian comedian Jim Jefferies points out the ridiculousness of American pro-gun arguments. x x

Welp

If you hunt, you can keep a hunting rifle, if you live in a rural area, you can keep a shotgun for bEARS, but there is no goddamn good reason to own an MK47, a weapon designed EXCLUSIVELY for killing people, no matter how “fun” it is

The whole idea that Americans have nothing to learn from the rest of the world on this issue continues to baffle me.

rebagel

Is gonna weigh in here even though is not a topic I cares lots about, but is much misinfo going on heres. The right to bear arms is NOT about hunting. Is not about self defense. Is about the right to has defense against a gov gone nuts as the Brits did in the 1700s.

Is not really a useful thing these days - even a AK-47 isn’t much use against a gov what is using bombs against its own citizens - but let’s be honest about the reason for the second amendment. Is about the right to defend the community against an oppressing force of army-type things. Is why the word “militia” is part of the amendment. Notice is not the word “vigilante”.

NRA is liars - it was never about hunting rifles or self defense, and the states what limit the guns does include those uses as license-able things. There isn’t a reason for peoples to own guns of killing other peoples since they can’t even claim is for protection against a gov gone nuts - they just doesn’t has the firepower. 

And if the cops would stop shooting peoples for being not-white and/or disabled, could probly even cut down the self-defense reasons.

Seizure First Aid. 

Learn it. Share it. Know it. Use it. 

100% correct medical information on tumblr for once; also consider calling 911 if you don’t know how often the person has seizures and ESPECIALLY if the seizure has lasted 5 minutes or more (which is why the watch is critical)

I have epilepsy so making sure the word is out on how to help people who do have seizures means a lot to me.

Yuuup.

As anon asked what you can do about it:

Figure out a pee schedule! Go before you start a new task. Always. Even if you don’t think you need it.

You might get better at figuring out what needing to pee feels like as you get older - I know I have - but the best thing to do is just to go anyway.

The worst thing that happens is that you go and didn’t need it.

Also, just be aware of where all of the bathrooms are in any spaces you frequently occupy and be aware of any laws surrounding them. Like, if your school or workspace has the legally required number of toilets per person built into the building but locks a bunch of them to save on cleaning or to discourage people from going and “wasting time”, that might be illegal and odds are your fellow students/co-workers are also annoyed and will help you confront the school/your boss.

And another tip for school (don’t know how old anon is, but this might be handy for anyone here), have an alert card signed by the headteacher that just says “this student has a medical condition and needs to be allowed to go to the toilet no matter what”. My middle school started out with discreetly telling all of my teachers, but I learned that wasn’t enough the hard way with one particularly shitty substitute teacher.

And for housing, unfortunately, making sure that you share your bathroom with as few people as possible might be a must. That expense actually prohibited me from moving away for uni, but sometimes you’ve just gotta know your limits.

And someone gave me shit for this last time it came up, saying that holding in pee giving you UTIs had been debunked, but I had UTIs non-stop while this was a problem for me, and my doctors said that it was the direct reason, so as much as it might make you need to go to the loo more often, try to drink a decent amount of water. I recently bought a Brita sports bottle that filters tap water as I drink from it and it’s pretty great for getting me room-temperature, no-taste water.

My issue is that when I’m up and moving, I notice when I have to pee, but I don’t notice when I’m still/stationary, like working at a desk.

I have the opposite problem. I really don’t notice when I am up and moving. And I teach and spend my summers at a therapeutic barn. I am rarely sitting down for any extended length of time.

I’m trying to get in the habit at the barn to go to the bathroom in between the groups and then between the last group and when the private lessons start. If I manage that, I should go at least 3 times at the barn and then twice at home.

I never knows when I has to go. Just doesn’t feel anything saying needs to. Sos guardians take me to the proper place on a schedule and I doesn’t make messes ... mostly.

autism psa pt 2 lol

having done some more reading I have been made aware of other conditions that also qualify as neurodiverse, such as ADHD, dyslexia, epilepsy, or any other neurological condition

However, as mental illnesses are psychological rather than neurological disorders, they wouldn’t come under the term neurodiverse

https://www.healthline.com/health/neurotypical

https://www.verywellhealth.com/what-does-it-mean-to-be-neurotypical-260047

https://www.merriam-webster.com/dictionary/neurotypical

https://www.quora.com/Whats-a-neurotypical-person

I’ve included a few links as references ! Anyway to conclude neurotypical is for people that don’t have a neurological, intellectual, or developmental condition, not for those without mental illnesses. It’s only been used as that since 2011, but was originally coined for those with neurological conditions

civil debate is welcome but if you start attacking anyone personally you’re getting blocked :)

Kay, I replied rather shortly instead of a reblog, but then you responded, sos I thinks a discussions is possible. Is sorry I was short.  Yes, gatekeeping is always bad.  Is exccluding peoples that needs the same helps that “born this way” needs. Just because they got neurodivergent later in life doesn’t mean they is still “neurotypical” NOW. Their brains is now working different from what the standard brains works. They is divergent.

Excluding them does not help them. Does not help us to exclude them from our community. 

I doesn’t see how gatekeeping can be useful to us or them.

We all need society to accept us as we are. Some can get helps through meds and therapy to get to appear more neurotypical, but in the process they is still suffering the same stigmas and abuse and ostracism that those of us “born this way” get.

I don’t understand your reason for excluding them from the community.

(peoples what wants to understand this commentary can sees the replies)

I’m not trying to exclude them or stop them from getting help? I’m just saying that they aren’t neurodivergent because they don’t have any neurological conditions?

People with mental illness are no less deserving of help than those with neurological conditions - the only difference is they aren’t neurodivergent?? that’s literally all I’m saying

But that isn’t true. Mental illness IS a neurodivergent condition. By definition. Their brain is not operating in the typical fashion - therefore is divergent. What is the reason for excluding them from the community?

I respectfully disagree. Someone who is severely depressed cannot be neurotypical, as they do not react to stimuli and situations in a neurotypical way. Many depressed people have memory issues due to the brain not functioning correctly.

Bipolar disorder is another one that completely changes the way your brain functions, but you could be born neurotypical and become bipolar later.

Yes, ADHD and autism are neurodivergences that you are born with, but being born neurotypical doesn’t guarantee you will stay that way.

Another example is dementia or alzheimers. I would definitely consider them neuro divergent even if it’s also technically a “mental health” issue, since it’s in the brain and affects personality, thoughts etc..

Um - that is what is what I is saiding? How is that a disgree?

autism psa pt 2 lol

having done some more reading I have been made aware of other conditions that also qualify as neurodiverse, such as ADHD, dyslexia, epilepsy, or any other neurological condition

However, as mental illnesses are psychological rather than neurological disorders, they wouldn’t come under the term neurodiverse

https://www.healthline.com/health/neurotypical

https://www.verywellhealth.com/what-does-it-mean-to-be-neurotypical-260047

https://www.merriam-webster.com/dictionary/neurotypical

https://www.quora.com/Whats-a-neurotypical-person

I’ve included a few links as references ! Anyway to conclude neurotypical is for people that don’t have a neurological, intellectual, or developmental condition, not for those without mental illnesses. It’s only been used as that since 2011, but was originally coined for those with neurological conditions

civil debate is welcome but if you start attacking anyone personally you’re getting blocked :)

Kay, I replied rather shortly instead of a reblog, but then you responded, sos I thinks a discussions is possible. Is sorry I was short.  Yes, gatekeeping is always bad.  Is exccluding peoples that needs the same helps that “born this way” needs. Just because they got neurodivergent later in life doesn’t mean they is still “neurotypical” NOW. Their brains is now working different from what the standard brains works. They is divergent.

Excluding them does not help them. Does not help us to exclude them from our community. 

I doesn’t see how gatekeeping can be useful to us or them.

We all need society to accept us as we are. Some can get helps through meds and therapy to get to appear more neurotypical, but in the process they is still suffering the same stigmas and abuse and ostracism that those of us “born this way” get.

I don’t understand your reason for excluding them from the community.

(peoples what wants to understand this commentary can sees the replies)

I’m not trying to exclude them or stop them from getting help? I’m just saying that they aren’t neurodivergent because they don’t have any neurological conditions?

People with mental illness are no less deserving of help than those with neurological conditions - the only difference is they aren’t neurodivergent?? that’s literally all I’m saying

But that isn’t true. Mental illness IS a neurodivergent condition. By definition. Their brain is not operating in the typical fashion - therefore is divergent. What is the reason for excluding them from the community?

autism psa pt 2 lol

having done some more reading I have been made aware of other conditions that also qualify as neurodiverse, such as ADHD, dyslexia, epilepsy, or any other neurological condition

However, as mental illnesses are psychological rather than neurological disorders, they wouldn’t come under the term neurodiverse

https://www.healthline.com/health/neurotypical

https://www.verywellhealth.com/what-does-it-mean-to-be-neurotypical-260047

https://www.merriam-webster.com/dictionary/neurotypical

https://www.quora.com/Whats-a-neurotypical-person

I’ve included a few links as references ! Anyway to conclude neurotypical is for people that don’t have a neurological, intellectual, or developmental condition, not for those without mental illnesses. It’s only been used as that since 2011, but was originally coined for those with neurological conditions

civil debate is welcome but if you start attacking anyone personally you’re getting blocked :)

Kay, I replied rather shortly instead of a reblog, but then you responded, sos I thinks a discussions is possible. Is sorry I was short.  Yes, gatekeeping is always bad.  Is exccluding peoples that needs the same helps that “born this way” needs. Just because they got neurodivergent later in life doesn’t mean they is still “neurotypical” NOW. Their brains is now working different from what the standard brains works. They is divergent.

Excluding them does not help them. Does not help us to exclude them from our community. 

I doesn’t see how gatekeeping can be useful to us or them.

We all need society to accept us as we are. Some can get helps through meds and therapy to get to appear more neurotypical, but in the process they is still suffering the same stigmas and abuse and ostracism that those of us “born this way” get.

I don’t understand your reason for excluding them from the community.

(peoples what wants to understand this commentary can sees the replies)