Top 10 Ways to Make a Difference
Published January 02, 2009 @ 06:46PM PT
by Kristina Chew and Dora Raymaker
Joining a walk for autism; wearing an "autism awareness" wristband: How else can you make a real, concrete difference for an autistic individual, and for her or his family? Here's ten to try:
1. Get Informed
There's a lot of information about autism and autistic people on the Internet, in the media, and in the public consciousness. Not all of this information is valid, accurate, or helpful to autistic people and their families. Approach autism information cautiously; use critical thinking. Question "experts": remember that somewhere exists the world's most incompetent scientist! Learn from people on the spectrum what their experiences are like. Learn from people with other types of disabilities what their experiences are like. Keep a cool head and think about why people might hold the opinions they do. Help to dispel myths, stereotypes, and misinformation when you encounter them.
2. Watch Your Language
It makes a difference how you talk about autism. Do you talk about autism as "disability" and "difference" rather than "disorder" and "disease," as something "devastating" and a "tragedy," as a "disaster"----as a "death sentence? Listen to how you hear other people speak about autism, and to what you yourself are saying. How often do you hear autism referred to as something negative, as something that has to be prevented and eliminated? Ask yourself: How would you feel if that's all that people said about you? What if, instead, we talked about autism in terms of diversity and of being different, in ways that call on us to think differently about what it means to be human?
3. Empower Leaders
Often people with disabilities, including autism, are either directly or indirectly disempowered. You can help to empower today's leaders by supporting self advocacy organizations run in full or part by individuals with disabilities, including autism and other developmental disabilities. You can help to empower future leaders by supporting programs that teach leadership and advocacy skills to people with disabilities, including autism. You can help empower individuals directly by treating them with the same respect you would treat a person who does not have a disability. Know that a person doesn't have to be creating vast change in the world to be an empowered leader--simply sticking up for one's rights, communicating one's needs (in whatever mode of communication is effective!), and having control over one's own life is enough.
4. Please Don't Stare
Please don't rush to judge a child who seems to be "misbehaving" and their parent, or someone who is doing "weird/odd/bizarre things"; please don't just assume that the child's parents are "lax," ineffective people who have no idea how to control their child. An autistic person who's having the sort of "tantrum" that people expect to see only in a toddler might be having a moment of deep anxiety and sensory overload. At such a moment, an autistic individual and her or his parents may not want help and advice (which can feel intrusive and judgmental): What they really need---what we really need---is understanding and compassion.
5. Support Disability Policy
Most of the policies that are good for people with disabilities in general are also good for people on the autistic spectrum. Support and work to uphold anti-discrimination policies such as the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973. Help to pass bills that include funding for services, better health care, access to beneficial therapy, and procurement of assistive technology such as communication devices. Lobby for Medicaid waivers, so that people with developmental disabilities can both hold fulfilling employment and still get the day-to-day assistance they need to survive. Support independent living centers, scholarships for people with disabilities, and programs for community inclusion.
6. Consider Yourself
Maybe you're different too? How has being different----in terms of religion, race, ethnicity, class---affected you and your life choices? Transfer this understanding to what it's like to be autistic, to be different, to be (as animal scientist Temple Grandin has said) an "anthropologist on Mars": For Kristina and her husband, Jim, learning about and accepting the things that make Charlie "different" have been essential, and have led them to reflect on their own differences, neurological and other.
7. Take Action
Blog, twitter, email, post, and tell others what you've learned about autism, autistic people, and autistic and disability rights. If you see a person with a disability or their friends or family members being discriminated against, abused, or treated otherwise inhumanely or unfairly, help to champion them. Get involved with an autistic, developmental / intellectual disability, or general disability organization (one that has actual disabled people on its board!) and take part in the group's initiatives--or support the organization with a donation. If you are an educator, teach tolerance in the classroom while also providing academic accommodations. If you are an employer, hire a qualified person on the autistic spectrum and give them the workplace accommodations they need to succeed. If you are anyone at all, give individuals on the spectrum a chance and the tools to succeed.
8. Autism is Global, But Think and Act Local
Joining a "walk for autism" is one thing you can do, but how can you help to make an actual concrete change in the life of an autistic individual, or of their family?
You can: Find out if there autistic children in your child's classroom, or in a Scout troop, or a gymnastics class, or if a friend has an autistic sibling or relative, or if one of your co-workers is autistic. Talk to you child about autism so that, when they see a 5' 4" tall boy who doesn't seem to be able to talk and walks around with his hands over his ears, you can say something more than "just ignore him". Parents of autistic individuals may often yearn to feel included to, and not just to receive a kindly smile when they mention their child's latest achievements (finally learning the alphabet after several years). The "help" that Kristina has often most appreciated is when people have reached out, in direct and simple ways, such as letting her and Charlie go ahead in a long line at a crowded grocery store.
9. Promote Tolerance More tolerance of difference--any sort of difference--in the world ultimately helps all people who are different. Seek to understand the experiences of all people who are marginalized, and apply that understanding toward a greater empathy.
10. What's Going On Around You?
Find out what kinds of services and supports and programs there are for autistic children and for autistic adults in your school district, in your community. What kinds of special education programs are offered at your child's school? at your YMCA or community center or place of worship? Does your company employ any disabled workers? How often do you see disabled workers in your community, whether working at grocery stores or stocking shelves, or in other positions? Is there a group home in your neighborhood that you've somehow never noticed?
Autism, and autistic individuals, are only "invisible" if you don't try to see them.
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Comments (17)
Comments on Change.org are meant for further exploration and evaluation of the ideas covered in the posts. To that end, we welcome constructive comments. However, we reserve the right to delete comments that are offensive, abusive, or off-topic; that contain ad hominem attacks; or that are designed to subvert or hijack comment threads rather than contribute to them. Repeat offenders may be permanently removed from the site at our discretion.
Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
Featured Autism Actions
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End the Perpetuation of Pity
186 People
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End the Perpetuation of Pity
"Joining a walk for autism"
Have yet to see one that wasn't really a "walk against autism"
Posted by jypsy norman-bain on 01/02/2009 @ 07:04PM PT
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What can you do today...
If you are a parent... Love your child unconditionally. Do not let your child feel they are any less because they cannot communicate the way we do or look after themselves. Do not forget to look after yourself and your significant other. ( If you don't have one find one...There is someone out there for everyone. You deserved to be loved also). Join a church. Speak to your friends. Keep up the good fight.
If you are Friend... If you have resources please consider supporting Generation Rescue as they move the agenda towards services and support programs. If you do not have financial resources provide respite services... Babysit, go with a parent to the grocery store, or running errands. Be there to listen.
If you are in the medical community it is time to wake up and do something...
If you are in the insurance industry it is time to make the people responsible pay...
if you are in the media it time to tell the truth...
If you are in the government it is time act...
If you are in education it is time to educate...
If you are in a religious community it is time to rally the troops to support families...
If you are in the New York City Office of Autism Speaks... remember that $50,000 you took from my community this fall could have helped to pay for my sons therapy this year.
If you are in contact with amanda peet and have a child with Autism invite her over to experience our lives first hand and but out of our childrens and the future of others children.
If you are impacted by autism (that means you are part of the human race) Join me in the fight. Join causecast with your own cause or mine. Make a difference in our world. now. State your change! Then make it happen.
If you happen to have some sleeping pills, sleep ideas for children with autism, or want to come spend the night let me know.... I need a nap.
If you are a stakeholder in anyway when it comes to Autism please join us on twitter on Tuesday Dec 23rd. #HHS We will try to make a difference for Families Dealing with Autism. Obama wants to know....
If you are in the pharmaceutical industry it is time to pray...
People it is just time to deal with Autism....
http://www.causecast.org/member/tanners-dad
Posted by Tim Welsh on 01/02/2009 @ 08:19PM PT
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Kristina and Dora, I'm so happy to see the two of you blogging here. You're both articulate and compassionate writers who have already contributed so much to the cause of improving the quality of life for autistic people.
My minor advocacy act for the day was to post the following question on the Obama transition team's Open for Questions feature at http://change.gov/page/content/openforquestions20081229/
"What will the Obama administration do to ensure that autistic people, as the primary stakeholders, will be able to participate meaningfully in policymaking on autism issues?"
Anyone who wants to pose a question, or vote on existing questions, can go to that link and sign up.
Posted by Anne Bevington on 01/02/2009 @ 10:21PM PT
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A nice list compilation, especially # 2 watch your language.
Posted by Bonnie Sayers on 01/02/2009 @ 11:02PM PT
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I would like to see more of an effort to unlock the potential of all people on the autism spectrum. Most efforts seem to be to change the behavior of those on the autism spectrum to conform to society's expectations. What if instead we value these people for their unique thoughts and abilities. The main thrust should be to help them communicate those thoughts and abilities. Many with autism are brilliant, but are locked in themselves. The world could use their brilliance.
Posted by Jill Jones on 01/03/2009 @ 12:01AM PT
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I'm so glad to see the both of you in this new capacity and I look forward to following. I'll certainly continue to do all I can in support of the cause.
Posted by Andrea Stanet on 01/03/2009 @ 05:31AM PT
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Good to see you both blogging here :)
Hopefully even people such as TannersDad might get a clue!
Posted by Kev Leitch on 01/03/2009 @ 06:45AM PT
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I guess Kev it is better to ignore the issues until somebody ends up found the next day dead in the bath tub? Is that the clue I should get? We all can be happy and use happy language but Autism has impact on even the elite of the society. As a world we must come to terms. Autism Hurts. Autism is an epidemic. Autism is treatable. Autism is preventable. Autism Is reversible. Autism is not Kawaski's Syndrome. I feel Autism ignored was a death sentence for one young man this week
Posted by Tim Welsh on 01/03/2009 @ 09:03AM PT
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Autism is treatable. Autism is preventable. This is the President of CHANGE, so be it!
Even if some or most of the kids on the spectrum can be healed, then we have to shout it from the rooftops (internet) so that parents know there is HOPE.
My son is nearly recovered thanks to people like Tanner's Dad.
I've never met him, buy by hearing people like him spread the word, my child will be "unlocked" (like a prior poster's comment). I owe it to the ones before me to continue to spread the words: Autism is treatable, Autism is preventable.
Posted by Nate's mom on 01/03/2009 @ 09:48AM PT
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I think we need to all work as TEAM.
There should be a walk for Autism called 'NT/Autism TEAM Walk-a-Thon' for a day may be in April for Autism Awareness Month.
What do you think? It would help make awareness proper for more NT/Autism Interaction.
sound good?
Posted by Jason Ross on 01/03/2009 @ 11:35PM PT
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Excellent blog. What a shame I feel you're preaching to the choir here--all of us closely connected to someone on the spectrum.
As a parent of a 12 yr old son--who I DO love unconditionally and advocate for daily. There is a wealth of information available...and I think I have read it all...or at least more than most people that I know who should be far better inforned than I am
I am frustrated because when I approached my son's pediatrician when my son was 2 about having my son screened for Autism, the response I got was, "Oh, there's no way her could possibly be Autistic--he's too high functioning" denying him treatment at an early age that would have help so much. He has since been diagnosed with PDD NOS. He remains high functioning.
I am frustrated because I still can't find appropriate therapy or interventions that I as a single mother with my own disabilities can afford. Therapists with experience dealing with children on the spectrum frequently do not accept medicaid. My son would benefit from a service dog, but financially, the cost of a Autism service dog is prohibitive. Yet still, I persevere.
Educators need to effectively teach, with accomodations as needed. But, to do that they need to be properly informed...and be willing to really listen to the parents and not assume they "know best" when clearly they don't--not when statements are put in writing, "You need to do something about your son, he's daydreaming a lot" Please. Drifting into "ones own world" is common for people on the spectrum.
The jury is still out on the cause of Autism. Some believe that immunizations cause children develop Autism and therefore adamantly state that Autism is curable and preventable. Yet there are also studies that show there are differences in the chromosomes between an Autistic child and an NT child. So, let's not fight about this. Rather, lets unite to help each individual on the spectrum become the best that they can be.
Posted by Kathryn Savage on 01/04/2009 @ 12:41AM PT
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I wish to express my public compliments to Jill Jones for her statement:
" I would like to see more of an effort to unlock the potential of all people on the autism spectrum. Most efforts seem to be to change the behavior of those on the autism spectrum to conform to society's expectations. What if instead we value these people for their unique thoughts and abilities. The main thrust should be to help them communicate those thoughts and abilities. Many with autism are brilliant, but are locked in themselves. The world could use their brilliance."
I also wish to publicly note that such an effort has been made here in Israel for the past 14 years and my own nearly 37 year-old son Ben, completely nonverbal and with so-called low-functioning autism, has been a beneficiary of the Pisgat Yehuda program (and Ben is also one of its founders and main driving forces in the program to help persons with autism). With the use of what I would call full-support Facilitated Communication, my son Ben has been able to express his deep thoughts which have been published in books and other publications here in Israel (primarily in Hebrew) and posted on various websites on the internet. His audience is in the many thousands throughout the world and he is a well-respected member of our ultraorthodox Jewish community (which by definition does not include any atheistic scoffers). Both my son and I pity the many brilliant people with autism who have miserable lives within the overly materialistic modern Western culture that my son Ben wisely chose to leave 14 years ago in the USA. We have tried to explain our approach to others but it has largely fallen on deaf ears, or worse even ridicule from others including people who state they are on the autism spectrum. But we will persist and pray for a better future for all people.
Arthur Golden of Jerusalem Israel
Posted by Arthur Golden on 01/04/2009 @ 08:05PM PT
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I have Aspergers Syndrome, it is mild high functioning autism; but I did not always know it. I knew I was different, but didn't know what the heck it was. I am also a musician/singer/songwriter; much of my songwriting is for healthcare crisis awareness. Upon finding what my condition is I am also adding autism awareness to my music. I have also put in my concern invitations "Being Challenged with Asperger's Syndrome I am reaching out autism awareness. If you have family, friends, or loved ones please bring them to meet a musician who has faced similar challenges." I have recently wrote my 3rd autism awareness song, inspired by a friend with classic autism and her boyfriend who is NT. The one inspiring my song is a very precious lady; she is partially verbal. One thing I am trying to do is reach the autistic community with my music.
Posted by John W. Knapp on 01/06/2009 @ 05:18PM PT
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I have a beautiful 7 year old son with Asperger's Syndrome. He is the joy of my life and a constant challenge. The school does not provide services because he is gifted, yet he cannot move ahead academically because he has "issues". Does this make sense to anyone besides District 91?? School is like torture for my son. The laws are written to help the schools, not the children, and NOBODY enforces them. I would love to have the school system reformed so every child has a chance to succeed, not just the "typical" student.
Posted by Kristine Greene on 01/16/2009 @ 09:19PM PT
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@Kristine Greene,
Yes, that more than makes sense. Does he have an IEP or any accommodations, with his diagnosis? Is the district doing anything regarding the "issues" and what kinds of reforms would most help him?
I know you're not alone in this. Thank you for writing about your son---
Posted by Kristina Chew on 01/17/2009 @ 07:52AM PT
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In the "take action" department, here is my recent effort:
http://www.youtube.com/watch?v=Zrg2rJMUASA
If you like what I'm trying to do please pass the link on to media, friends, advocates, etc. Thanks!
Posted by John Kirton on 03/11/2009 @ 07:51AM PT
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Excellent work! I will pass the link along!
Posted by Kathryn Savage on 03/13/2009 @ 01:07AM PT
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