Lysik'an

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 [email protected] 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+).

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:  [email protected]

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,

lazy

crazy

not trying hard enough

r*tarded

doesn’t want to do the work 

weird

freak

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. 

Hey Anon,

Thanks for your ask. To be honest, it can be really really difficult for us to distinguish between autism and ADHD simply because the symptoms can be so different in different people and symptoms can overlap a great deal. It’s not uncommon for ADHD and autism to occur together and it can be tricky for professionals themselves to differentiate between the two sometimes.

We can’t help diagnose you since we aren’t professionals, but this article seems to point out some differences between the two conditions. I encourage you to talk to your therapist about it and voice your concerns because it is something you two can explore. At the same time, I encouarge you to not focus too much on the diagnosis but rather focus on the symptoms you are experiencing and how you can manage those. Sometimes we get very caught up with naming  things and labeling them that they lose their scope, the most important aspect to this all is you and your wellbeing and that goes beyond any diagnoses.

I hope this helps somewhat. Take care and good luck.

Seizure First Aid. 

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.

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. 

Seizure First Aid. 

Yes, incontinence is very common in the autistic community to varying degrees but it is something that it isn’t talked about enough.

Most of the time, it doesn’t fit the usual types of incontinence most doctors know about.

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.

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

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.

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.

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

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.

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

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.