"Not only does God play dice, but... he sometimes throws them where they cannot be seen."
The quote above reminds me that everyone and everything have value, and our not being aware of what value a human being has cannot negate that worth.
I've been involved with other things for awhile. Things happening in the nonvirtual world, or 'meat space' motivated me to try and talk about some other things that have been on my mind about communication, parenting, and the presumption of competence.
Stephen Hawking
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| Mustafa using sign language to tell his sister what he wants to buy ©K.Cevik |
I've been involved with other things for awhile. Things happening in the nonvirtual world, or 'meat space' motivated me to try and talk about some other things that have been on my mind about communication, parenting, and the presumption of competence.
A young autistic friend of mine, Emma Zurcher-Long, learned to type recently and now can communicate by typing independently. She is an excellent example that assistive technology assessments and pathways should be continually offered to autistic loved ones no matter what their age, regardless of whether or not prior attempts fail. The tendency of conventional wisdom driven autism nonprofits, service providers, and other stakeholders to constantly emphasize early intervention, then deem the autistic nonspeaking individual 'doomed' if they cannot meet certain criteria after such intervention or by a certain age is incorrect .
Regardless of age, the most important bar to community access, autonomy, self-advocacy, and proper care autistic nonspeaking people face is the lack of communication support. Schools don't prioritize this in IEPs. At a time when some schools are thwarting the Individuals with Disabilities Education Improvement Act (IDEIA) by using online IEP formats as templates to standardize goals by disability rather than creating truly individualized education plans for disabled students, we parents must be vigilant about ensuring that communication is the highest goal for our nonspeaking autistic students.
Annual assistive technology assessments should be required for nonspeaking autistic students until an AAC system is found that is a good match. In addition, overall student performance enrichment by intensive speech service support should continue until the individual student has mastered AAC device-based communication. This means mastery sufficient to use it to communicate effectively with their teaching team in an inclusive classroom setting. Establishing a solid communication foundation between nonspeaking students and all teaching teams that will facilitate their educational lives both now and in the future is critical. This is rarely if ever done in the present special education classroom or in what passes for inclusive classrooms in too many public schools. It is the primary bar to the inclusion of nonspeaking students in the general education classroom. While we are all chasing the dream of the fully inclusive classroom as the natural socialization tool for disabled children, we are overlooking giving them the primary means of accessing that or any other environment that is their right.
The lack of comprehensive augmentative communication support throughout the autism education system allows abuse, neglect, and the presumption of incompetence of nonspeaking students.
The lack of comprehensive augmentative communication support throughout the autism education system allows abuse, neglect, and the presumption of incompetence of nonspeaking students.
My nonspeaking friends and colleagues' honest revelations of the ups and downs in their life narratives are important because this valuable insight helps us understand that even if we happen to hit on an AAC support that allows our children to type or communicate independently and fluently tomorrow, that doesn't mean that our disabled loved ones will suddenly be 'indistinguishable from their peers', and that is a myth too many parents who manage to get their kids to type grab onto and it is the root of the ableism-based abuse that happens to nonspeaking autistics even after they acquire a means to communicate.
The example of what happened to Carly Fleischmann after she began spontaneously typing is before us. She lost her ability to type and was forced to find other ways to build words, because neurodivergent Carly continued to be unacceptable to her parents, despite the fact that their ableism throughout her life played a serious part in the pain and self-loathing she now carries. Disability doesn't disappear because someone is able to communicate better or because technology offers greater community access. Those of us who parent and educate need to grasp that and accept that communication doesn't equal a 'cure' of disability. Nor does being able to type to communicate mean we have the right to demand our view of 'normalcy' from a divergent individual.
The example of what happened to Carly Fleischmann after she began spontaneously typing is before us. She lost her ability to type and was forced to find other ways to build words, because neurodivergent Carly continued to be unacceptable to her parents, despite the fact that their ableism throughout her life played a serious part in the pain and self-loathing she now carries. Disability doesn't disappear because someone is able to communicate better or because technology offers greater community access. Those of us who parent and educate need to grasp that and accept that communication doesn't equal a 'cure' of disability. Nor does being able to type to communicate mean we have the right to demand our view of 'normalcy' from a divergent individual.
The critical nature of gaining, then mastering device-supported communication means that those autistic individuals may be better able to explain when they've erred and for us who are parents, that means the doors to facilitating and mentoring open wider. Gaining AAC support also means the chance for diagnosis of conditions like auditory processing disorders that require the person being tested be able to communicate what they hear during a test. So if you are carers of autistic people who have gained communication skills through AAC support, consider testing for conditions that may still be undiagnosed before placing increased demands on your loved ones they may not be able to process.
As people grow up and grow older, they will argue. Another holdover from both the angelic disabled child infantilization and the idealized child myth is the concept that somehow our disabled offspring don’t have a right to lose their tempers, behave badly, or fail in the same way nondisabled offspring do. We parents, educators, and carers need to stop putting that kind of expectation of compliant perfection on our disabled nonspeaking loved ones and students.
Why then is compliance and correction writ so large in autism support and intervention? We need to educate the communities outside of ours that our children have a right to express frustration, sadness, disappointment, fear, and anger as long as they cause no harm to themselves and others. We have this same expectation of every young person in society, yet our expectations of our disabled young people are neither fair nor reasonable.
Why then is compliance and correction writ so large in autism support and intervention? We need to educate the communities outside of ours that our children have a right to express frustration, sadness, disappointment, fear, and anger as long as they cause no harm to themselves and others. We have this same expectation of every young person in society, yet our expectations of our disabled young people are neither fair nor reasonable.
What we are not doing in the disability rights advocacy community is stressing that failures and behavioral missteps are how we humans learn. We were never meant to be the behavioral prison guards of our own children. We were meant to parent them. Once we change that attitude, which is gaslighted into our brains by all those meant to provide service and support for our children, we will be at the doorstep of the breakthroughs we need to properly parent our own autistic children regardless of age, behavioral history, perceived degree of disability or any other bar to a parent simply being a parent to their children.
Some nonspeaking people may never be able to communicate as fluently as others. Some may be truly operating at a cognitive level that is infantile. We must accept everyone as they are, and not reject association with a nonspeaking adult that is not the magic autistic trope or the silent altruistic shaman who wiggles his nose and causes miracles. We have to accept neurodivergence in all expressions and at all levels.
Many people, including neurodivergent people, either refuse to presume that a person with global developmental challenges can live and achieve an autonomous quality of life as an adult with the proper supports or refuse to accept this expression of autism as being part of the greater autism community. Everyone who holds these attitudes needs to realize that they are impeding the uplifting of an entire community and being part of a caste system that does not truly benefit anyone. When you act based on function labels you not only isolate your peers but you do the dirty work of ableist people whose goal is to divide this very large block of people into smaller, more manageable groups who can then be denied the supports and services they need. Wake up and understand that my son is just as great a person as a savant, an autistic who uses verbal speech, or a famous autistic individual whose head is filled with the helium of false praise so common on social media.
An individual'sat degree of disability should never matter in the fight for human rights. Just as when a person who identifies as Black is Black whether they have vitiligo or not, a person who is Autistic is Autistic whether you are comfortable with their visible degree of disability or not. If people cannot tolerate being around teens like my son and his peers, then they need to take a good hard look at their own struggles with internalized ableism, rather than redefining autism to suit their inability to accept a group of people who share their neurology.
The video above features O. J. Brigance using AAC supporting eye-gaze technology to give testimony against euthanasia legislation in Maryland.
One more very important thing about assistive technology for communication. If the chosen method of communication does not lead to the nonspeaking autistic user being able to live an autonomous life, then a better match must be found. Assistive technology only works if the end user is ultimately able to communicate whether parents or care providers are there or not. Note that both O.J. Brigance and Stephen Hawking have remained productive in the advanced stages of ALS because their AAC communication technology allows them to communicate autonomously with eye gaze technology. This method of communication support was well thought out when they were at a stage of greater mobility. When we choose assistive technology we must be forward-thinking by making decisions that can bring communication autonomy for an individual's lifetime and we must give our students the foundation to be able to shift from older systems to modern, more seamless ones requiring less outside support. As a community, we should be lobbying for funding to expand the use of the most advanced technology for our own children, fighting for their autonomy, rather than warring over causation.
Many people, including neurodivergent people, either refuse to presume that a person with global developmental challenges can live and achieve an autonomous quality of life as an adult with the proper supports or refuse to accept this expression of autism as being part of the greater autism community. Everyone who holds these attitudes needs to realize that they are impeding the uplifting of an entire community and being part of a caste system that does not truly benefit anyone. When you act based on function labels you not only isolate your peers but you do the dirty work of ableist people whose goal is to divide this very large block of people into smaller, more manageable groups who can then be denied the supports and services they need. Wake up and understand that my son is just as great a person as a savant, an autistic who uses verbal speech, or a famous autistic individual whose head is filled with the helium of false praise so common on social media.
An individual'sat degree of disability should never matter in the fight for human rights. Just as when a person who identifies as Black is Black whether they have vitiligo or not, a person who is Autistic is Autistic whether you are comfortable with their visible degree of disability or not. If people cannot tolerate being around teens like my son and his peers, then they need to take a good hard look at their own struggles with internalized ableism, rather than redefining autism to suit their inability to accept a group of people who share their neurology.
O. J. Brigance uses eye gaze technology to give the pivotal testimony against euthanasia legislation in Maryland.
The video above features O. J. Brigance using AAC supporting eye-gaze technology to give testimony against euthanasia legislation in Maryland.
One more very important thing about assistive technology for communication. If the chosen method of communication does not lead to the nonspeaking autistic user being able to live an autonomous life, then a better match must be found. Assistive technology only works if the end user is ultimately able to communicate whether parents or care providers are there or not. Note that both O.J. Brigance and Stephen Hawking have remained productive in the advanced stages of ALS because their AAC communication technology allows them to communicate autonomously with eye gaze technology. This method of communication support was well thought out when they were at a stage of greater mobility. When we choose assistive technology we must be forward-thinking by making decisions that can bring communication autonomy for an individual's lifetime and we must give our students the foundation to be able to shift from older systems to modern, more seamless ones requiring less outside support. As a community, we should be lobbying for funding to expand the use of the most advanced technology for our own children, fighting for their autonomy, rather than warring over causation.
May all your parenting, teaching, peer mentoring, or self-advocating days be joyful ones.
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For my Son, Magnificent Mustafa N. Çevik and his outstanding father C.Nuri Çevik, Emma Zurcher-Long and Ariane Zurcher, Henry Frost and Lauri Swan Hunt
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References:
For more information about under the radar autistics who type independently with AAC devices:
On The Silenced Voice of Carly Fleischmann
Carly Fleishman can communicate via typing again. A fairly recent development. That article referred to is rather skewed, as if Carly can't possibly make a major decision on her own...or have been mistaken in doing so. Yes, it was a highly risky treatment...and in hindsight a terrible one for her, even more so than otherwise.
ReplyDeleteIf she has the right to communicate and make up her own mind...is it then automatically the fault of her parents if those decisions go wrong? And no, she didn't discuss her treatment considerations on FB....who does, except TMI bloggers?
Carly had to relearn to type by choosing blocks of words rather than typing them at will, but her activities continue to be heavily monitored by her parents and that is quite concerning. Presumption of competence by definition means support is given only to aide in step towards independence. This hyper control is evident in the book Carly's Voice, a book written by her father with Carly only listed as a contributor in a book about her voice and her life. That is as sad as it is odd, as Carly is fully able to communicate and thus the book should have been authored by her and only contributed to by her father. That is the difference between allowing a disabled adult agency in their own lives and usurping it. This is the point being made that you're missing.
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