The ABCs of Autism Acceptance by Sparrow Rose Jones, eBook 2016; an Extended Review with < My Thoughts > by Sara Luker
1% I am an Autistic adult, so all those messages of despair are about me and people like me. I hear the terrible things that are said about Autism and those of us who are Autistic and I have to wonder if the people saying those things believe we don’t have feelings. Or maybe they think we’re too far gone to ever hear what they’re saying about us. But they are wrong.
We hear and understand and hurt. And not just Autistic adults, but children too. We hear what is said about us, and it is devastating.
My goal was to write something every day in April (Autism Awareness Month), working my way through the alphabet as I talked about ways to understand and accept us better.
This is a book about ways that it is wonderful to be Autistic and ways that the world makes it very difficult for us Autistics to find a place to survive and thrive in it. As I wrote, sometimes I felt myself speaking to fellow Autistic adults, and at other times to parents of Autistic children.
1% I am an Autistic adult, so all those messages of despair are about me and people like me. I hear the terrible things that are said about Autism and those of us who are Autistic and I have to wonder if the people saying those things believe we don’t have feelings. Or maybe they think we’re too far gone to ever hear what they’re saying about us. But they are wrong.
We hear and understand and hurt. And not just Autistic adults, but children too. We hear what is said about us, and it is devastating.
My goal was to write something every day in April (Autism Awareness Month), working my way through the alphabet as I talked about ways to understand and accept us better.
This is a book about ways that it is wonderful to be Autistic and ways that the world makes it very difficult for us Autistics to find a place to survive and thrive in it. As I wrote, sometimes I felt myself speaking to fellow Autistic adults, and at other times to parents of Autistic children.
1% Important ideas: presume competence, do not try to fix us for we are not broken, help us to live the fullest and most fulfilling lives we can, always remember to include us as the main stakeholders in the decisions that are made about us and our future.
I apologize to my siblings in other countries for being so focused on the details of my own country, but I can only write what I know.
< My Thoughts > “…my siblings in other countries…”
Autism is a global concern. According to www.globalautismproject.org there are 70 million people in the world with Autism; 85% of them live in developing countries.
These high rates of Autism, www.worldatlas.com/ tells us may be caused by unexplained environmental conditions. This high number may also be attributed to the increased awareness and more effective diagnostic methods. The highest number of cases per 10,000 children, per year was in Japan at 161; their research telling them it has a relationship to the MMR vaccine. The lowest cases, 9.2 per 10,000 are found in Portugal where they say it is detected along with other more recognizable medical conditions. The USA showed 66 cases per 10,000, stating that early detection and surveillance are keys to Autism awareness. U.S. researchers found that both genetics and environmental factors are closely correlated to causes in this country.
Garcia-Primo, et al. (2014) report that Europe leads the field with development screening and screening study of Autism. Spain, the Netherlands, England, Belgium, Italy, Finland, and France have reported that their numbers may be ‘under’ reported, due to parents or physicians not wanting to subject children to lengthy assessments. This refers to the CHAT and M-CHAT tests which are used by clinicians to consistently improve early ASD detection procedures across Europe.
Note: The CHAT – Checklist for Autism in Toddlers and M-CHAT – Modified- Checklist for Autism in Toddlers are testing instruments used by pediatricians who have been trained to give and interpret these testing instruments.
1% Bring an open mind to this book. You may feel challenged by some of what you read. Some of these essays will make you angry or sad. I hope all of them will move you to action. I want you to challenge ableism.
I want you to listen to Autistic people. I want you to help us as we work to make the world a better, safer place for us to live. If you are Autistic, I want you to love and accept yourself for who you are at this moment, and to never give up on yourself in your quest to be the person you dream of being.
2% You will always be Autistic, and that is a wonderful thing. Embrace who you are and work to become the best you can be. The world needs your voice – whether it comes from your mouth, your hands, or from someplace else entirely. The world needs your opinions and dreams.
This is your time on this earth and I want you to always remember that you belong here and that you are a vital piece of the great mystery.
A is for Acceptance –
You may have noticed in the last half-decade or so that there is a growing trend toward speaking of Autism acceptance instead of Autism awareness.
(Acceptance because…) beneath Autism, there is more Autism – it’s Autism all the way to the core. Autistic children do not “go into remission,” we develop coping skills and we mature into Autistic adults, and we work to learn ways to communicate with those around us.
There might be suffering that can be alleviated – seizures brought under control, gastrointestinal disorders treated, methods learned, and sometimes medications taken for mitigating anxiety or other difficulties – but this suffering is not Autism. Like many other genetically-based human variants, Autism tends to come along with a higher rate of certain conditions.
3% Often, I hear people rejecting the notion of Autism acceptance because they are mistaken about what it actually is. They think it means giving up and doing nothing to make a person’s life better. They think of it as sinking beneath the waves and drowning.
Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not.
Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of Autism and Autistic people in ways that presume competence and communicate value.
Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you and not despite your differences, but because of them,” from Kassiane Sibley, Autistic author & blogger at Radical Neurodivergence Speaking, Blog.
4% We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people.
5% B is for Bullying –
“All kids get bullied; it’s a rite of passage!” CBS News reported that 63% of Autistic children have been bullied and are three times more likely to be bullied than their siblings without Autism. I told my parents about a lot of the bullying I faced in school, but there was a lot more I didn’t tell them about. I was ashamed of the way I was treated.
8% Bullying is just another example of why we need to fight so hard for Autism acceptance. Children take their cues from teachers and parents.
Acceptance means teaching school principals and teachers how to understand bullying dynamics so that they can see more of what is going on, not just the desperate reactions of a badly bullied child with fewer skills of social subterfuge that their ‘more social sophisticated’ tormentors.
Until Autistic people are accepted, bullying will continue and it will be justified by those who don’t understand what’s happening. Until we have full Autism acceptance, there will always be people who see our vulnerabilities…move from violence and bullying to understanding, friendship, and love.
< My Thoughts > “move from violence and bullying to understanding, friendship, and love.”
Garcia-Biggs, et al. (2010) paint a picture of a child with an unsteady gait, slow or odd movements, and less stamina as a child being viewed by bullies as weak and an easy target for verbal or physical abuse. These children themselves soon become aware of their limited ability to assert any power or control over their lives. This raises serious issues about the importance of parents and school personnel making certain that there is an effective intervention to address the specific needs of students with disabilities.
They go on to say that establishing a buddy system and allowing for the child with ASD to have a role model to enact how to recognize and handle bullying situations. In a no-tolerance situation all acts of bullying should be reported, investigated, and receive consequences as outlined by a student code of conduct. Each child should have a ‘safe place’ to go where they can receive help, if in a fearful situation.
I apologize to my siblings in other countries for being so focused on the details of my own country, but I can only write what I know.
< My Thoughts > “…my siblings in other countries…”
Autism is a global concern. According to www.globalautismproject.org there are 70 million people in the world with Autism; 85% of them live in developing countries.
These high rates of Autism, www.worldatlas.com/ tells us may be caused by unexplained environmental conditions. This high number may also be attributed to the increased awareness and more effective diagnostic methods. The highest number of cases per 10,000 children, per year was in Japan at 161; their research telling them it has a relationship to the MMR vaccine. The lowest cases, 9.2 per 10,000 are found in Portugal where they say it is detected along with other more recognizable medical conditions. The USA showed 66 cases per 10,000, stating that early detection and surveillance are keys to Autism awareness. U.S. researchers found that both genetics and environmental factors are closely correlated to causes in this country.
Garcia-Primo, et al. (2014) report that Europe leads the field with development screening and screening study of Autism. Spain, the Netherlands, England, Belgium, Italy, Finland, and France have reported that their numbers may be ‘under’ reported, due to parents or physicians not wanting to subject children to lengthy assessments. This refers to the CHAT and M-CHAT tests which are used by clinicians to consistently improve early ASD detection procedures across Europe.
Note: The CHAT – Checklist for Autism in Toddlers and M-CHAT – Modified- Checklist for Autism in Toddlers are testing instruments used by pediatricians who have been trained to give and interpret these testing instruments.
1% Bring an open mind to this book. You may feel challenged by some of what you read. Some of these essays will make you angry or sad. I hope all of them will move you to action. I want you to challenge ableism.
I want you to listen to Autistic people. I want you to help us as we work to make the world a better, safer place for us to live. If you are Autistic, I want you to love and accept yourself for who you are at this moment, and to never give up on yourself in your quest to be the person you dream of being.
2% You will always be Autistic, and that is a wonderful thing. Embrace who you are and work to become the best you can be. The world needs your voice – whether it comes from your mouth, your hands, or from someplace else entirely. The world needs your opinions and dreams.
This is your time on this earth and I want you to always remember that you belong here and that you are a vital piece of the great mystery.
A is for Acceptance –
You may have noticed in the last half-decade or so that there is a growing trend toward speaking of Autism acceptance instead of Autism awareness.
(Acceptance because…) beneath Autism, there is more Autism – it’s Autism all the way to the core. Autistic children do not “go into remission,” we develop coping skills and we mature into Autistic adults, and we work to learn ways to communicate with those around us.
There might be suffering that can be alleviated – seizures brought under control, gastrointestinal disorders treated, methods learned, and sometimes medications taken for mitigating anxiety or other difficulties – but this suffering is not Autism. Like many other genetically-based human variants, Autism tends to come along with a higher rate of certain conditions.
3% Often, I hear people rejecting the notion of Autism acceptance because they are mistaken about what it actually is. They think it means giving up and doing nothing to make a person’s life better. They think of it as sinking beneath the waves and drowning.
Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not.
Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of Autism and Autistic people in ways that presume competence and communicate value.
Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you and not despite your differences, but because of them,” from Kassiane Sibley, Autistic author & blogger at Radical Neurodivergence Speaking, Blog.
4% We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people.
5% B is for Bullying –
“All kids get bullied; it’s a rite of passage!” CBS News reported that 63% of Autistic children have been bullied and are three times more likely to be bullied than their siblings without Autism. I told my parents about a lot of the bullying I faced in school, but there was a lot more I didn’t tell them about. I was ashamed of the way I was treated.
8% Bullying is just another example of why we need to fight so hard for Autism acceptance. Children take their cues from teachers and parents.
Acceptance means teaching school principals and teachers how to understand bullying dynamics so that they can see more of what is going on, not just the desperate reactions of a badly bullied child with fewer skills of social subterfuge that their ‘more social sophisticated’ tormentors.
Until Autistic people are accepted, bullying will continue and it will be justified by those who don’t understand what’s happening. Until we have full Autism acceptance, there will always be people who see our vulnerabilities…move from violence and bullying to understanding, friendship, and love.
< My Thoughts > “move from violence and bullying to understanding, friendship, and love.”
Garcia-Biggs, et al. (2010) paint a picture of a child with an unsteady gait, slow or odd movements, and less stamina as a child being viewed by bullies as weak and an easy target for verbal or physical abuse. These children themselves soon become aware of their limited ability to assert any power or control over their lives. This raises serious issues about the importance of parents and school personnel making certain that there is an effective intervention to address the specific needs of students with disabilities.
They go on to say that establishing a buddy system and allowing for the child with ASD to have a role model to enact how to recognize and handle bullying situations. In a no-tolerance situation all acts of bullying should be reported, investigated, and receive consequences as outlined by a student code of conduct. Each child should have a ‘safe place’ to go where they can receive help, if in a fearful situation.
Excerpts from this author’s first book, No You Don’t – Essays from an Unstrange Mind; by Sparrow Rose Jones, (2013) –
13% I still don’t do well with “just hanging out.” There has to be an event, a purpose, a point to hanging out. In my twenties, I managed to find a circle of friends by getting involved in a drug culture. So, as long as I had drugs, I was part of the community.
15% I tried going to classes on days when I couldn’t speak. But I ended up dealing with some particularly nasty bullying…when I showed up unvoiced (using my computer to communicate.) I realized that there is only so much “eccentricity” others are willing to accept and when I transgress they can become brutal. … I get no acceptance for the times I cannot speak because other times I can speak quite well.
16% So, since it is impossible to hide those times when I am unable to speak …I just hide. If I can’t hide my autism, I hide my whole body and I hate that. I hate that who I am is not “okay” with others … so I literally hide… I don’t show up as promised.
67% …I may be one of the most idealistic people I know, but even I know better than to think that we can completely eliminate bullying in my lifetime. But that’s no reason not to start.
Don’t laugh or look away when you see it. That’s the first step to ending bullying: showing that our society no longer accepts it, even when the bully is really letting loose with some hilarious one-liners. Even when no one really likes the victim. Especially when no one really likes the victim.
Be the kind of person who accepts others and keeps their confidences private. Be a mentor. Be a friend.
Promoting peace, compassion, and an end to bullying doesn’t mean you have to change who you are in any way. But it might change everyone around you. And that’s exactly what we all need.
33% Because you don’t have autism; you are autism. It is who you are and it is beautiful and painful and joyous and tragic and challenging and fascinating, and real. Every day. Every minute.
When I meet parents of young Autistic kids…many of them say “I hope my kid is like you when she grows up!” “No you don’t,”…
End of excerpts from author’s first book…
C is for Color –
9% When the face of Autism is nearly exclusively a White face what happens to Autistic African-American, Autistic Asian-American, Autistic Native American, Autistic Latino-Americans – any Autistic People of Color?
The problem for all communities of Color is that they are under-diagnosed, under-served, under-valued, and under-protected. This is a difficult topic for me because I am White and thus I am afraid of talking over People of Color or marginalizing others by filtering their lives and experiences through my lens of White privilege.
10% I might say the wrong thing. I might not say the right things. But to not say anything at all would be the greatest error of all. Because the face of Autism is so overwhelmingly White, as adults, Autistic People of Color often get disregarded and detoured when they seek diagnosis and assistance.
12% I challenge you to notice the color of Autism as you look around our community and I challenge you to do whatever is in your power to add strength to the voices of People of Color – Autistic People of Color and their families. Until they are heard and until their needs are valued and until they are cherished as important members of our neurotribe we can talk about acceptance all day and all night but we will never find it.
10% Diagnosis can also be more difficult for adult (kids) Autistic People of Color who slipped through the cracks as the system was adjusting diagnostic criteria when they were growing up. So what does it look like for multiple communities of people (kids) to be under-diagnosed, under-served, under-valued, and under-protected? Reports say that Black and Latino children are diagnosed significantly later than White children. They get disregarded and detoured when they seek diagnosis and assistance. The people around them often unfairly blame them for their troubles and often compound those struggles unnecessarily. Without diagnosis, people (kids) are left without accommodations, without appropriate learning plans, or career assistance, and without crucial understanding that leads to acceptance of the individual, divergent neurotype and all.
< My Thoughts > “Autistic People of Color who slipped through the cracks.”
In book there are websites listed which address African American & Hispanic issues. It seems that nationally, minority families and families with lower incomes have difficulty entering the early intervention system. http://www.child-autism-parent-cafe.com/african-american-and-autism.html also offers information and resources to share. They say that some ASD families were not aware of a written plan for goals and services for their child, required by law, according to the U.S. Department of Education.
National averages show that the length of time between ‘concerns’ and early intervention, for children of minorities, is 5.2 months longer that those of other children. And, they add that African-American children, especially boys, are more susceptible to vaccine injury. They say that states which do not comply with vaccine laws will not be eligible for grants for “preventive health services” under the Public Health Services Act; as of May 2015. Contact the Developmental Disabilities Council in your state to find out more information regarding services and applying for financial and resource benefits.
Burkett, et al. (2015) talk about cultural factors such as health care access and Autism Spectrum Disorder symptom interpretations which are impacting and delaying diagnosis/treatment for African-American children with ASD. Plus, they say that this population is 5.1 times more likely to receive a misdiagnosis of conduct disorder or mental retardation. Many families narrated their concerns when seeking answers about their child’s challenges. They felt that Health Care Professionals (HCPs) either ‘judged them’ and/or questioned their ability to deliver therapeutics at home. This added a barrier to building a working relationship. There were ‘signs of disrespect’ and of HCPs acting in a way that caused families to postpone seeking further health care for their child. To counter this, some families set about to change their communities by helping one another and by identifying those HCPs who helped them get in-home therapies and tried to build provider-patient relationships.
Overton, et al. (2007) add that many Hispanic families who have public school children don’t realize that without a medical diagnosis their child does not meet the criteria of federal regulations for receiving services under Individuals with Disabilities Education Act (IDEA). They include the thought that many children with Asperger’s may have a more complex diagnosis, because ASD may be combined with other disorders, plus possible dual-language barrier problems. Parents also needed to be able to access any questionnaires and/or testing materials in their home language, with a trained interpreter to assist with all of these. Thus, improving the validity and sensitivity of these inquiry sessions for the parents.
Lajonchere, et al. (2016) discuss racial disparities, compounded by possible low-income and language barriers in the Hispanic community. The majority of 83 participant families in this study felt that overall, they were able to speak the English language well enough to express concerns. There were issues though, with printed information that was too technical, too long, or was too condescending with cartoons of a non-informational kind. Hispanic families stated that it was helpful to have well-written and professionally made video and/or audio recordings which when used could facilitate discussions. And, 90% of the group ask for more discussions sessions with follow-up to allow them to understand more about how they could help their child.
13% I still don’t do well with “just hanging out.” There has to be an event, a purpose, a point to hanging out. In my twenties, I managed to find a circle of friends by getting involved in a drug culture. So, as long as I had drugs, I was part of the community.
15% I tried going to classes on days when I couldn’t speak. But I ended up dealing with some particularly nasty bullying…when I showed up unvoiced (using my computer to communicate.) I realized that there is only so much “eccentricity” others are willing to accept and when I transgress they can become brutal. … I get no acceptance for the times I cannot speak because other times I can speak quite well.
16% So, since it is impossible to hide those times when I am unable to speak …I just hide. If I can’t hide my autism, I hide my whole body and I hate that. I hate that who I am is not “okay” with others … so I literally hide… I don’t show up as promised.
67% …I may be one of the most idealistic people I know, but even I know better than to think that we can completely eliminate bullying in my lifetime. But that’s no reason not to start.
Don’t laugh or look away when you see it. That’s the first step to ending bullying: showing that our society no longer accepts it, even when the bully is really letting loose with some hilarious one-liners. Even when no one really likes the victim. Especially when no one really likes the victim.
Be the kind of person who accepts others and keeps their confidences private. Be a mentor. Be a friend.
Promoting peace, compassion, and an end to bullying doesn’t mean you have to change who you are in any way. But it might change everyone around you. And that’s exactly what we all need.
33% Because you don’t have autism; you are autism. It is who you are and it is beautiful and painful and joyous and tragic and challenging and fascinating, and real. Every day. Every minute.
When I meet parents of young Autistic kids…many of them say “I hope my kid is like you when she grows up!” “No you don’t,”…
End of excerpts from author’s first book…
C is for Color –
9% When the face of Autism is nearly exclusively a White face what happens to Autistic African-American, Autistic Asian-American, Autistic Native American, Autistic Latino-Americans – any Autistic People of Color?
The problem for all communities of Color is that they are under-diagnosed, under-served, under-valued, and under-protected. This is a difficult topic for me because I am White and thus I am afraid of talking over People of Color or marginalizing others by filtering their lives and experiences through my lens of White privilege.
10% I might say the wrong thing. I might not say the right things. But to not say anything at all would be the greatest error of all. Because the face of Autism is so overwhelmingly White, as adults, Autistic People of Color often get disregarded and detoured when they seek diagnosis and assistance.
12% I challenge you to notice the color of Autism as you look around our community and I challenge you to do whatever is in your power to add strength to the voices of People of Color – Autistic People of Color and their families. Until they are heard and until their needs are valued and until they are cherished as important members of our neurotribe we can talk about acceptance all day and all night but we will never find it.
10% Diagnosis can also be more difficult for adult (kids) Autistic People of Color who slipped through the cracks as the system was adjusting diagnostic criteria when they were growing up. So what does it look like for multiple communities of people (kids) to be under-diagnosed, under-served, under-valued, and under-protected? Reports say that Black and Latino children are diagnosed significantly later than White children. They get disregarded and detoured when they seek diagnosis and assistance. The people around them often unfairly blame them for their troubles and often compound those struggles unnecessarily. Without diagnosis, people (kids) are left without accommodations, without appropriate learning plans, or career assistance, and without crucial understanding that leads to acceptance of the individual, divergent neurotype and all.
< My Thoughts > “Autistic People of Color who slipped through the cracks.”
In book there are websites listed which address African American & Hispanic issues. It seems that nationally, minority families and families with lower incomes have difficulty entering the early intervention system. http://www.child-autism-parent-cafe.com/african-american-and-autism.html also offers information and resources to share. They say that some ASD families were not aware of a written plan for goals and services for their child, required by law, according to the U.S. Department of Education.
National averages show that the length of time between ‘concerns’ and early intervention, for children of minorities, is 5.2 months longer that those of other children. And, they add that African-American children, especially boys, are more susceptible to vaccine injury. They say that states which do not comply with vaccine laws will not be eligible for grants for “preventive health services” under the Public Health Services Act; as of May 2015. Contact the Developmental Disabilities Council in your state to find out more information regarding services and applying for financial and resource benefits.
Burkett, et al. (2015) talk about cultural factors such as health care access and Autism Spectrum Disorder symptom interpretations which are impacting and delaying diagnosis/treatment for African-American children with ASD. Plus, they say that this population is 5.1 times more likely to receive a misdiagnosis of conduct disorder or mental retardation. Many families narrated their concerns when seeking answers about their child’s challenges. They felt that Health Care Professionals (HCPs) either ‘judged them’ and/or questioned their ability to deliver therapeutics at home. This added a barrier to building a working relationship. There were ‘signs of disrespect’ and of HCPs acting in a way that caused families to postpone seeking further health care for their child. To counter this, some families set about to change their communities by helping one another and by identifying those HCPs who helped them get in-home therapies and tried to build provider-patient relationships.
Overton, et al. (2007) add that many Hispanic families who have public school children don’t realize that without a medical diagnosis their child does not meet the criteria of federal regulations for receiving services under Individuals with Disabilities Education Act (IDEA). They include the thought that many children with Asperger’s may have a more complex diagnosis, because ASD may be combined with other disorders, plus possible dual-language barrier problems. Parents also needed to be able to access any questionnaires and/or testing materials in their home language, with a trained interpreter to assist with all of these. Thus, improving the validity and sensitivity of these inquiry sessions for the parents.
Lajonchere, et al. (2016) discuss racial disparities, compounded by possible low-income and language barriers in the Hispanic community. The majority of 83 participant families in this study felt that overall, they were able to speak the English language well enough to express concerns. There were issues though, with printed information that was too technical, too long, or was too condescending with cartoons of a non-informational kind. Hispanic families stated that it was helpful to have well-written and professionally made video and/or audio recordings which when used could facilitate discussions. And, 90% of the group ask for more discussions sessions with follow-up to allow them to understand more about how they could help their child.
34% I is for Identity –
Please think about what I have written here the next time you are tempted to say that you love your child but hate Autism. Will your child hear the difference? So many of us are hurt by those kinds of statements. Don’t set your child up to hate who s/he is at their very core.
< My Thoughts > "I is for Identity" -
In addition to Autism, a huge part of person’s identity, of course, is one’s sexuality. Bennett & Goodall (2016) quote a study which recommended that all individuals with Autism should be explicitly taught about safe sexual activities. This, they say, is to prevent them from contracting sexually transmitted diseases. The Autism Lesbian, Gay, Bisexual, Transgendered and/or Intersexed (LGBTI) community has very little literature available on safe sexual health. They advise that there should also be more interest in identifying the possible sexual and mental health issues of this group and treating any social, emotional or psychological risk factors that they face.
Brown-Lavoie, Viecili, & Weiss (2014) say that it is important that we understand there is a significant gap between what individuals with ASD know and what they think they know about sexual activities. Also, parents indicate through this study, that their children (of all ages) with ASD tend to have less knowledge of privacy issues related to sexual behavior. And, that they receive less information about sexuality from their peers.
Added to that, counselors related that the people with ASD they encountered never reported sexual victimization to the authorities because they didn’t have an understanding of the perpetrator’s intentions. Neither did they understand that they were being sexually coerced against their will. They only thought they were missing social subtleties which led to the interaction and then they became fearful of asserting their own feelings or wishes to stop it. Beyond that, those who had been victimized rarely had the language, identifiable emotions, or ways to express the incident in spoken words. Nor did they have the ability to write what happened down with pencil and paper.
34% Think about the language you use. Make a conscious effort to refer to a person’s Autism in ways that do not devalue them or set them up to feel that something about them is wrong or inappropriate. The words you use are an important part of Autism acceptance. Words have power to wound or heal; choose your words wisely.
37% There are a few Autistic authors with a high readership, but the bloggers talking about parenting Autistic children from the perspective of being an Autistic parent? Their readership is the digital equivalent of crickets chirping…
38% Cynthia Kim is a well-written Autistic parent. “There are many autistic parents. Yet we seem to be largely invisible when it comes to Autism-related supports…absent from the landscape.” “However, as an autistic parent, we have a secret weapon – one that can make our autistic children’s lives less challenging than our own have been.”
“We love and accept each other enough to be ourselves. I am able to help him put words to things he doesn’t yet understand. I am able to help him figure out sensory issues that bother him and help him find solutions that work for him. I’m a problem solver and I work at something ‘til all the kinks are worked out.’”
38% K is for Kids (But Probably Not the Ones You Expected) –
Autistic parents have a hard time finding each other. They have a hard time finding information about their own situation. Lots of Autistic parents are keeping a low profile if they are able to pass as non-autistic folks. There is a realistic fear of having one’s kids taken away by society. Lots of people are very interested to hear about parenting Autistic children… until they realize that the information is coming from an Autistic adult.
It is time to move past awareness and accept the Autistic parents among us, offering encouragement and support. And listening to them. After all… who can you turn to for the truly insider view of raising Autistic children? These are the experts who understand and can explain how to nurture the autistic neurology – they literally know it inside and out.
“Acceptance and understanding were common themes when autistic mothers talked about their parenting strengths. ‘It has been a huge benefit to have a shared neurology with my son,’ says one mother. She says that ‘he finds great comfort in the fact that I can understand his need for the routines and stimming that others see as odd.’
47% O is for Overload –
Some of us might seem pretty solid most of the time, others might always be living so close to the anxious edge that it does not take very much at all to push us over. Many of us are both of these extremes, at different times and in different situations.
We are dynamic, not static, and how much support we need, how overloaded we become, how we react to the stresses of life – these things are constantly changing. Over time, we develop coping abilities, develop new skill, grow up, gain perspective. Life is always changing and we are always changing along with it.
Sometimes, a thing I could handle yesterday is out of my grasp today. Sometimes a place that is usually good for me is hard to cope with. Sometimes I’m not sure what is stressing me out. Sometimes I’m not even good at realizing that I’m stressed out at all and I need a break.
52% It’s okay to help us find our limits if we don’t know what they are. It’s okay to help us grow past our limits in manageable bites that leave us in sufficient control, but it is imperative to respect our limits when we communicate them to you.
We live in these bodies and we learn, over time, how much they can handle. If the amount we can cope with is less than you think is normal or acceptable, it is not your job to try to force us ‘out of our shells.’ We aren’t in shells. Often we are simply practicing self-care. Respect that.
52% Help us to grow in ways that are not stressful and damaging. Research has shown that repeated stressful stimulation changes the brain in damaging ways.
Slow down. Listen to us. It may be horrible for you to have to be around us when we are overloaded, overstimulated, and overwhelmed, but I assure our it is infinitely more horrible for us to experience being in overload, overstimulation and overwhelm. Have compassion for our struggles and respect for everything we do to help ourselves.
P is for Poverty –
52% I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults who are often quite literally starving and I worry about the children – what, if anything, will be there for them when they grow up?
54% So much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs, and I don’t want to cut back on those efforts at all.
We aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, may of our health needs (for example, special diets for people with celiac, a condition that occurs more frequently in the Autistic population than the general population) are expensive enough that a living wage for a non-disabled person is not a living wage for some of us.
< My Thoughts > What are the Symptoms of Celiac Disease? Retrieved from https://www.webmd.com/...celiac-disease/celiac-disease-symptoms
Symptoms of gas and diarrhea which worsen if you have eaten a food that has gluten; a protein found in wheat, rye, and barley. When you have celiac disease your small intestine can’t properly digest nutrients from food. Over time, this will cause more health problems.
Read more at https://celiac.org/celiac-disease/understanding-celiac-disease continues with - “A simple blood test is available to screen for celiac disease. People with celiac disease who eat gluten have higher than normal levels of certain antibodies in their blood. You must be on a gluten-containing diet for antibody blood testing to be accurate.”
Furthermore, Barcia, et al. (2008) tell us that Celiac disease is an immune-mediated, chronic multisystemic disorder triggered by gluten ingestion in genetically predisposed individuals. Some believe that CD screening should be recommended for all children with Autism, even if no gastrointestinal symptoms are present.
Barbero, et al. (2014) say that Celiac disease is present in – 1% of the general population in the United States and Europe. That despite the inexpensive screening tests, most individuals go undiagnosed.
55% I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits.
I applied for SSI several times before I finally got it – not because I was being turned down, but because I was too hopeless and struggling to keep up with the application process.
Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce. Most people are more likely to be willing to work alongside someone they know is Autistic than someone who is just acting “weird.”
But it’s clear that it’s time to admit that some Autistics – even some highly educated Autistics – are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance at finding and keeping online employment. And, a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.
We live in a political climate where poor people are blamed for their poverty and disabled people, particularly those without obvious physical disabilities, are viewed with great skepticism, so vulnerable people who really need disability benefits should get help with the often confusing process of application, appeals, documentation, and more.
I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in substandard conditions or living with aging parents, who don’t have resources themselves. It has been a silent crisis for too long. We need help and we need it now.
< My Thoughts > “I want people to understand how easy it is for Autistic adults to end up homeless.”
From a letter to the Editor, written by Matthew Bennett (2016). Bennett wanted people to know about other critical living conditions such as living with aging parents and the lack of published literature on elderly adults with Autism. Another problem of concern, he explains is that for many years the first diagnostic criteria was only for clinicians focusing on diagnosing children. There was (and still is) less known about how ASD presented in adults, especially elderly adults.
He suggests that it would be beneficial for the government to increase funding for evaluating health systems to enable senior citizens to receive a correct diagnosis. And, to channel their funding and attention to the medical discoveries which will advance all human health in ethical dimensions.
Added to this dilemma, are the senior adults who are raising grandchildren who are on the Autism spectrum. Harnett, et al. (2014) account for grandparents who are being called upon to provide care for autistic children who are not able to remain with their birth parents. They say that taking on this role is often unexpected, tragic and traumatic. Most had a main source of income which was insufficient to cope with the costs of taking children into their care.
Using any savings or other resources they had put aside for emergencies, an analysis proves they receive little or no support from government. This study found that foster parents would be paid an equitable monthly amount to care for children, but the same amount of payment was not available for family member carers. Also, they found a failure when it came to support from the school systems they had to deal with.
In an original article from Newcastle, UK by Margetts, et al. (2006) they bring to our attention that one well-recognized potential source of family support is the role of grandparents. They say that when there is a child born with a disability, maternal grandparents are found to provide the most support. Accordingly, they create a parental bond, re-enact parenthood, and become the expert striving for answers.
For the least part, Sullivan, et al. (2012) found that families with an autistic child needed grandparent involvement. Instrumentally for support with caring, transportation to and from medical and other health care appointments; as well as for financial back-up. Grandparents were also found to help the family with the acceptance of children with disabilities, contributing positive attitudes and serving as a parenting and teaching model.
Forgive me, but this is a convenient platform to shine a light on the senior adults, such as my husband and myself, who are providing for an adult-child on the spectrum. There are many out there who have taken on this role. Then there is that population of aging parents and grandparents, who are themselves on the spectrum, many undiagnosed. Whichever senior category one fits into, there certainly are not enough supports and services to adequately help make life a little easier.
Q is for Quiet Hand Getting Loud –
56% Quiet Hands. If you’re Autistic, you are probably familiar with the phrase. It’s the admonition to stop fidgeting, stop flapping, stop moving, stop what’s called “stimming.” But “quiet hands” is not acceptance. It is part of the goal of so many Autism therapies. The dirty truth about “quiet hands” and other attempts to train the Autism out of us is that these sorts of therapies – are not really helping us.
57% I am a big fan of Rapid Prompting Method (RPM), Facilitated Communication (FC), typing or pointing at a letter board to communicate. I love to read the words of those who communicate with their hands. And one thing I have noticed many of those folks saying is that they can only communicate if they are allowed time to stim in between typing.
< My Thoughts > “facilitated communication…”
Cardinal & Falvey (2014) explain that Facilitated Communication (FC) is a process to initially encourage communication in the form of prompts, supports, or stabilizing of the hand or arm. This would then, after becoming successful, be faded to the child making the choice independently. Fading support also minimizes the threat of facilitator influence on the writer/speaker.
The communication partner provides support in a variety of ways, perhaps emotional support to encourage communication, or help to focus on the keyboard, or desired words. Despite the challenges to the method, many find that with refining their techniques, individuals are able to ensure authenticity of authorship of the typed message. Allowing them to write their own stories, and for them the controversy has ended.
These authors found that the body of research which validates Facilitated Communication (FC) is growing. Methodologies used have appeased many critics. For example, this study used video eye-tracking of the FC user’s eye gaze to verify that the individual letter, or series of letters, was truly targeted by the individual. For clarity, they say, not everyone becomes independent at typing their own messages. Some, must continue to point, use a pointer, or have assistance pointing to words on a chart or keyboard. But, the ability to become successful at writing messages, authors say, has less to do with intellectual capacity and more to do with fine motor issues.
Note: Read more about Rapid Prompting Method (RPM): Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language by Soma Mukhopadhyay; Paperback 2013.
83% We are not ‘faking distress in order to manipulate” you as I have more than once seen a non-autistic person claim about an Autistic person’s very real breakdown. You may not understand our triggers. Sometimes we are not sure what is upsetting us. For those who have been traumatized, the past is not dead. We live and often re-live our traumas. You are not coddling us; you are protecting us.
84% Respect our need for calm and comfort. Some of us have very damaged nervous systems and we are not being weak when we ask for relief from the stress. We are being very strong in advocating for deep needs. You are not indulging us or rewarding us when you help us to maintain a calm and soothing environment. You are showing compassion and respect when you help us to feel safe and have the space to self-heal.
57% Some flap their hands. Some twirl things like a special string. Some drop to the floor and roll back and forth. These kinds of motions – these very beautiful Autistic motions – help us to stay centered, to stay focused, to regulate huge emotions, to give needed input to nervous systems that do not function in the same way as those of most people around us. Our quiet hands get loud and if you believe in Autism acceptance you need to embrace our loud hands and understand why it is that our bodies need to sing.
References used here:
Barbero, E., McNally, S., Donohue, M., et al. (2014). Barriers impeding serologic screening for celiac disease in clinically high-prevalence populations; BioMed Central; BMC Gastroenterology; V14:42.
Barcia,G., Posar, A., Santucci, M., Parmeggiani, A., et al. (2008). Autism and Celiac Disease; Journal of Autism Developmental Disorders; V38, p.407 – 408.
Bennett, M. (2016). “What is Life Like in the Twilight Years?” A Letter About the Scant Amount of Literature on the Elderly with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.1883 – 1884.
Bennett, M. & Goodall, E. (2016). Towards an agenda for Research for Lesbian, Gay, Bisexual, Transgendered and/or Intersexed People with an Autism Spectrum Diagnosis (LGBTI); Journal of Autism & Developmental Disorders; V46, p3190-3192.
Brown-Lavoie, S., Viecili, M., & Weiss, J. (2014). Sexual Knowledge and Victimization in Adults with Autism Sprectrum Disorders; Journal of Autism & Developmental Disorders; V44, p2185-2196.
Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., Shambley-Ebron, D. (2015). African American Families on Autism Diagnosis and Treatment: The Influence of Culture; Journal of Autism & Developmental Disorders; V45, p3244-3254.
Cardinal, D., & Falvey, M. (2014). The Maturing of Facilitated Communication: A Means Toward Independent Communication; Research & Practice for Persons with Severe Disabilities; V39(3); p189-194.
Garcia-Biggs, M., Simpson, C., Gaus, M. (2010). Using a Team Approach to Address Bullying of Students with Asperger’s Syndrome in Activity-based Settings; Children & Schools; V32:3.
Garcia-Primo, P., Hellendoorn, A., Charman, T., Roeyers, H., et al. (2014). Screening for autism spectrum disorders: state of the art in Europe; European Child & Adolescent Psychiatry; V23, p 1005-1021.
Harnett, P., Dawe, S., Russell, M. (2014). An investigation of the needs of grandparents who are raising grandchildren; Child & Family Social Work; V19, p 411-420.
Lajonchere, C., Wheeler, B., Valente, T., et al. (2016). Strategies for Desseminating Information of Biomedical Research on Autism to Hispanic Parents; Journal of Autism & Developmental Disorders; V46, p1038-1050.
Margetts, J., Couteur, A., Croom, S. (2006). Families in a state of flux: the experience of grandparents in autism spectrum disorder; Journal compilation; Blackwell Publishing Ltd., Newcastle, UK.
Overton, T., Fielding, C., Garcia de Alba, R. (2008). Brief Report: Exploratory Analysis of the ADOS Revised: Hispanic Children Referred for ASD; Journal of Autism & Developmental Disorders; V38, p1166-1169.
Sullivan, A., Winograd, G., Verkuilen, J., Fish, M. (2012). Children of the Autism Spectrum: Grandmother Involvement and Family Functioning; Journal of Applied Research in Intellectual Disabilities; v24, p484-494.
Please think about what I have written here the next time you are tempted to say that you love your child but hate Autism. Will your child hear the difference? So many of us are hurt by those kinds of statements. Don’t set your child up to hate who s/he is at their very core.
< My Thoughts > "I is for Identity" -
In addition to Autism, a huge part of person’s identity, of course, is one’s sexuality. Bennett & Goodall (2016) quote a study which recommended that all individuals with Autism should be explicitly taught about safe sexual activities. This, they say, is to prevent them from contracting sexually transmitted diseases. The Autism Lesbian, Gay, Bisexual, Transgendered and/or Intersexed (LGBTI) community has very little literature available on safe sexual health. They advise that there should also be more interest in identifying the possible sexual and mental health issues of this group and treating any social, emotional or psychological risk factors that they face.
Brown-Lavoie, Viecili, & Weiss (2014) say that it is important that we understand there is a significant gap between what individuals with ASD know and what they think they know about sexual activities. Also, parents indicate through this study, that their children (of all ages) with ASD tend to have less knowledge of privacy issues related to sexual behavior. And, that they receive less information about sexuality from their peers.
Added to that, counselors related that the people with ASD they encountered never reported sexual victimization to the authorities because they didn’t have an understanding of the perpetrator’s intentions. Neither did they understand that they were being sexually coerced against their will. They only thought they were missing social subtleties which led to the interaction and then they became fearful of asserting their own feelings or wishes to stop it. Beyond that, those who had been victimized rarely had the language, identifiable emotions, or ways to express the incident in spoken words. Nor did they have the ability to write what happened down with pencil and paper.
34% Think about the language you use. Make a conscious effort to refer to a person’s Autism in ways that do not devalue them or set them up to feel that something about them is wrong or inappropriate. The words you use are an important part of Autism acceptance. Words have power to wound or heal; choose your words wisely.
37% There are a few Autistic authors with a high readership, but the bloggers talking about parenting Autistic children from the perspective of being an Autistic parent? Their readership is the digital equivalent of crickets chirping…
38% Cynthia Kim is a well-written Autistic parent. “There are many autistic parents. Yet we seem to be largely invisible when it comes to Autism-related supports…absent from the landscape.” “However, as an autistic parent, we have a secret weapon – one that can make our autistic children’s lives less challenging than our own have been.”
“We love and accept each other enough to be ourselves. I am able to help him put words to things he doesn’t yet understand. I am able to help him figure out sensory issues that bother him and help him find solutions that work for him. I’m a problem solver and I work at something ‘til all the kinks are worked out.’”
38% K is for Kids (But Probably Not the Ones You Expected) –
Autistic parents have a hard time finding each other. They have a hard time finding information about their own situation. Lots of Autistic parents are keeping a low profile if they are able to pass as non-autistic folks. There is a realistic fear of having one’s kids taken away by society. Lots of people are very interested to hear about parenting Autistic children… until they realize that the information is coming from an Autistic adult.
It is time to move past awareness and accept the Autistic parents among us, offering encouragement and support. And listening to them. After all… who can you turn to for the truly insider view of raising Autistic children? These are the experts who understand and can explain how to nurture the autistic neurology – they literally know it inside and out.
“Acceptance and understanding were common themes when autistic mothers talked about their parenting strengths. ‘It has been a huge benefit to have a shared neurology with my son,’ says one mother. She says that ‘he finds great comfort in the fact that I can understand his need for the routines and stimming that others see as odd.’
47% O is for Overload –
Some of us might seem pretty solid most of the time, others might always be living so close to the anxious edge that it does not take very much at all to push us over. Many of us are both of these extremes, at different times and in different situations.
We are dynamic, not static, and how much support we need, how overloaded we become, how we react to the stresses of life – these things are constantly changing. Over time, we develop coping abilities, develop new skill, grow up, gain perspective. Life is always changing and we are always changing along with it.
Sometimes, a thing I could handle yesterday is out of my grasp today. Sometimes a place that is usually good for me is hard to cope with. Sometimes I’m not sure what is stressing me out. Sometimes I’m not even good at realizing that I’m stressed out at all and I need a break.
52% It’s okay to help us find our limits if we don’t know what they are. It’s okay to help us grow past our limits in manageable bites that leave us in sufficient control, but it is imperative to respect our limits when we communicate them to you.
We live in these bodies and we learn, over time, how much they can handle. If the amount we can cope with is less than you think is normal or acceptable, it is not your job to try to force us ‘out of our shells.’ We aren’t in shells. Often we are simply practicing self-care. Respect that.
52% Help us to grow in ways that are not stressful and damaging. Research has shown that repeated stressful stimulation changes the brain in damaging ways.
Slow down. Listen to us. It may be horrible for you to have to be around us when we are overloaded, overstimulated, and overwhelmed, but I assure our it is infinitely more horrible for us to experience being in overload, overstimulation and overwhelm. Have compassion for our struggles and respect for everything we do to help ourselves.
P is for Poverty –
52% I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults who are often quite literally starving and I worry about the children – what, if anything, will be there for them when they grow up?
54% So much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs, and I don’t want to cut back on those efforts at all.
We aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, may of our health needs (for example, special diets for people with celiac, a condition that occurs more frequently in the Autistic population than the general population) are expensive enough that a living wage for a non-disabled person is not a living wage for some of us.
< My Thoughts > What are the Symptoms of Celiac Disease? Retrieved from https://www.webmd.com/...celiac-disease/celiac-disease-symptoms
Symptoms of gas and diarrhea which worsen if you have eaten a food that has gluten; a protein found in wheat, rye, and barley. When you have celiac disease your small intestine can’t properly digest nutrients from food. Over time, this will cause more health problems.
Read more at https://celiac.org/celiac-disease/understanding-celiac-disease continues with - “A simple blood test is available to screen for celiac disease. People with celiac disease who eat gluten have higher than normal levels of certain antibodies in their blood. You must be on a gluten-containing diet for antibody blood testing to be accurate.”
Furthermore, Barcia, et al. (2008) tell us that Celiac disease is an immune-mediated, chronic multisystemic disorder triggered by gluten ingestion in genetically predisposed individuals. Some believe that CD screening should be recommended for all children with Autism, even if no gastrointestinal symptoms are present.
Barbero, et al. (2014) say that Celiac disease is present in – 1% of the general population in the United States and Europe. That despite the inexpensive screening tests, most individuals go undiagnosed.
55% I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits.
I applied for SSI several times before I finally got it – not because I was being turned down, but because I was too hopeless and struggling to keep up with the application process.
Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce. Most people are more likely to be willing to work alongside someone they know is Autistic than someone who is just acting “weird.”
But it’s clear that it’s time to admit that some Autistics – even some highly educated Autistics – are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance at finding and keeping online employment. And, a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.
We live in a political climate where poor people are blamed for their poverty and disabled people, particularly those without obvious physical disabilities, are viewed with great skepticism, so vulnerable people who really need disability benefits should get help with the often confusing process of application, appeals, documentation, and more.
I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in substandard conditions or living with aging parents, who don’t have resources themselves. It has been a silent crisis for too long. We need help and we need it now.
< My Thoughts > “I want people to understand how easy it is for Autistic adults to end up homeless.”
From a letter to the Editor, written by Matthew Bennett (2016). Bennett wanted people to know about other critical living conditions such as living with aging parents and the lack of published literature on elderly adults with Autism. Another problem of concern, he explains is that for many years the first diagnostic criteria was only for clinicians focusing on diagnosing children. There was (and still is) less known about how ASD presented in adults, especially elderly adults.
He suggests that it would be beneficial for the government to increase funding for evaluating health systems to enable senior citizens to receive a correct diagnosis. And, to channel their funding and attention to the medical discoveries which will advance all human health in ethical dimensions.
Added to this dilemma, are the senior adults who are raising grandchildren who are on the Autism spectrum. Harnett, et al. (2014) account for grandparents who are being called upon to provide care for autistic children who are not able to remain with their birth parents. They say that taking on this role is often unexpected, tragic and traumatic. Most had a main source of income which was insufficient to cope with the costs of taking children into their care.
Using any savings or other resources they had put aside for emergencies, an analysis proves they receive little or no support from government. This study found that foster parents would be paid an equitable monthly amount to care for children, but the same amount of payment was not available for family member carers. Also, they found a failure when it came to support from the school systems they had to deal with.
In an original article from Newcastle, UK by Margetts, et al. (2006) they bring to our attention that one well-recognized potential source of family support is the role of grandparents. They say that when there is a child born with a disability, maternal grandparents are found to provide the most support. Accordingly, they create a parental bond, re-enact parenthood, and become the expert striving for answers.
For the least part, Sullivan, et al. (2012) found that families with an autistic child needed grandparent involvement. Instrumentally for support with caring, transportation to and from medical and other health care appointments; as well as for financial back-up. Grandparents were also found to help the family with the acceptance of children with disabilities, contributing positive attitudes and serving as a parenting and teaching model.
Forgive me, but this is a convenient platform to shine a light on the senior adults, such as my husband and myself, who are providing for an adult-child on the spectrum. There are many out there who have taken on this role. Then there is that population of aging parents and grandparents, who are themselves on the spectrum, many undiagnosed. Whichever senior category one fits into, there certainly are not enough supports and services to adequately help make life a little easier.
Q is for Quiet Hand Getting Loud –
56% Quiet Hands. If you’re Autistic, you are probably familiar with the phrase. It’s the admonition to stop fidgeting, stop flapping, stop moving, stop what’s called “stimming.” But “quiet hands” is not acceptance. It is part of the goal of so many Autism therapies. The dirty truth about “quiet hands” and other attempts to train the Autism out of us is that these sorts of therapies – are not really helping us.
57% I am a big fan of Rapid Prompting Method (RPM), Facilitated Communication (FC), typing or pointing at a letter board to communicate. I love to read the words of those who communicate with their hands. And one thing I have noticed many of those folks saying is that they can only communicate if they are allowed time to stim in between typing.
< My Thoughts > “facilitated communication…”
Cardinal & Falvey (2014) explain that Facilitated Communication (FC) is a process to initially encourage communication in the form of prompts, supports, or stabilizing of the hand or arm. This would then, after becoming successful, be faded to the child making the choice independently. Fading support also minimizes the threat of facilitator influence on the writer/speaker.
The communication partner provides support in a variety of ways, perhaps emotional support to encourage communication, or help to focus on the keyboard, or desired words. Despite the challenges to the method, many find that with refining their techniques, individuals are able to ensure authenticity of authorship of the typed message. Allowing them to write their own stories, and for them the controversy has ended.
These authors found that the body of research which validates Facilitated Communication (FC) is growing. Methodologies used have appeased many critics. For example, this study used video eye-tracking of the FC user’s eye gaze to verify that the individual letter, or series of letters, was truly targeted by the individual. For clarity, they say, not everyone becomes independent at typing their own messages. Some, must continue to point, use a pointer, or have assistance pointing to words on a chart or keyboard. But, the ability to become successful at writing messages, authors say, has less to do with intellectual capacity and more to do with fine motor issues.
Note: Read more about Rapid Prompting Method (RPM): Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language by Soma Mukhopadhyay; Paperback 2013.
83% We are not ‘faking distress in order to manipulate” you as I have more than once seen a non-autistic person claim about an Autistic person’s very real breakdown. You may not understand our triggers. Sometimes we are not sure what is upsetting us. For those who have been traumatized, the past is not dead. We live and often re-live our traumas. You are not coddling us; you are protecting us.
84% Respect our need for calm and comfort. Some of us have very damaged nervous systems and we are not being weak when we ask for relief from the stress. We are being very strong in advocating for deep needs. You are not indulging us or rewarding us when you help us to maintain a calm and soothing environment. You are showing compassion and respect when you help us to feel safe and have the space to self-heal.
57% Some flap their hands. Some twirl things like a special string. Some drop to the floor and roll back and forth. These kinds of motions – these very beautiful Autistic motions – help us to stay centered, to stay focused, to regulate huge emotions, to give needed input to nervous systems that do not function in the same way as those of most people around us. Our quiet hands get loud and if you believe in Autism acceptance you need to embrace our loud hands and understand why it is that our bodies need to sing.
References used here:
Barbero, E., McNally, S., Donohue, M., et al. (2014). Barriers impeding serologic screening for celiac disease in clinically high-prevalence populations; BioMed Central; BMC Gastroenterology; V14:42.
Barcia,G., Posar, A., Santucci, M., Parmeggiani, A., et al. (2008). Autism and Celiac Disease; Journal of Autism Developmental Disorders; V38, p.407 – 408.
Bennett, M. (2016). “What is Life Like in the Twilight Years?” A Letter About the Scant Amount of Literature on the Elderly with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.1883 – 1884.
Bennett, M. & Goodall, E. (2016). Towards an agenda for Research for Lesbian, Gay, Bisexual, Transgendered and/or Intersexed People with an Autism Spectrum Diagnosis (LGBTI); Journal of Autism & Developmental Disorders; V46, p3190-3192.
Brown-Lavoie, S., Viecili, M., & Weiss, J. (2014). Sexual Knowledge and Victimization in Adults with Autism Sprectrum Disorders; Journal of Autism & Developmental Disorders; V44, p2185-2196.
Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., Shambley-Ebron, D. (2015). African American Families on Autism Diagnosis and Treatment: The Influence of Culture; Journal of Autism & Developmental Disorders; V45, p3244-3254.
Cardinal, D., & Falvey, M. (2014). The Maturing of Facilitated Communication: A Means Toward Independent Communication; Research & Practice for Persons with Severe Disabilities; V39(3); p189-194.
Garcia-Biggs, M., Simpson, C., Gaus, M. (2010). Using a Team Approach to Address Bullying of Students with Asperger’s Syndrome in Activity-based Settings; Children & Schools; V32:3.
Garcia-Primo, P., Hellendoorn, A., Charman, T., Roeyers, H., et al. (2014). Screening for autism spectrum disorders: state of the art in Europe; European Child & Adolescent Psychiatry; V23, p 1005-1021.
Harnett, P., Dawe, S., Russell, M. (2014). An investigation of the needs of grandparents who are raising grandchildren; Child & Family Social Work; V19, p 411-420.
Lajonchere, C., Wheeler, B., Valente, T., et al. (2016). Strategies for Desseminating Information of Biomedical Research on Autism to Hispanic Parents; Journal of Autism & Developmental Disorders; V46, p1038-1050.
Margetts, J., Couteur, A., Croom, S. (2006). Families in a state of flux: the experience of grandparents in autism spectrum disorder; Journal compilation; Blackwell Publishing Ltd., Newcastle, UK.
Overton, T., Fielding, C., Garcia de Alba, R. (2008). Brief Report: Exploratory Analysis of the ADOS Revised: Hispanic Children Referred for ASD; Journal of Autism & Developmental Disorders; V38, p1166-1169.
Sullivan, A., Winograd, G., Verkuilen, J., Fish, M. (2012). Children of the Autism Spectrum: Grandmother Involvement and Family Functioning; Journal of Applied Research in Intellectual Disabilities; v24, p484-494.
< My Thoughts > I hope you have found these books by Sparrow Rose Jones - The ABC's of Autism Acceptance and No You Don't: Essays from an Unstrange Mind as inspiring as I have. Please search out these books and read every word. Regards, Sara Luker
