Category Archives: Autism

A discussion of the realities of autism and the parents who deal with autism every day.

WarriorMama_holdinghands

The Power In A Name

Job and Lizze

My whole life I wanted to be a mother. I cared for my one baby doll as if it were a child. My desire for mothering was intense. After the formalities of getting a college education and a husband were precluded I set my sights on the biggest longing of my heart… a child.

After years of infertility, my husband and I struggled with how we would grow our family. The choices of more infertility treatments and adoption were both viable and expensive. It was during this time that the question was posed to me, Continue reading →

Lifestyle and Environmental Clues May Help Our Children with Autism

The following is an Autism survey that we at GNMParents support and urge you to pass along. It was created by Mischelle Miller-Raftery, PhD, who explains her research below:

Autism has reached epidemic proportions, yet even with the increase in research, no one has come up with the proverbial “smoking gun.” Research may never be able to pin down the exact causes. What we can hope for is that research will give us clues as to what is contributing to autism and what is triggering the genetic malfunction causing autism. For example, researchers at the UC Davis have found preliminary results that certain flea and tick shampoos used by mothers during pregnancy has a statistically significant rate of the diagnosis of autism in their children—more research is needed.

In the past there was a battle between a pure genetic malfunction verses a pure environment exposure being the cause. Most researchers now believe that it is a combination of these two factors that cause autism. Of course, genetics will likely be shown to play a significant role in many cases of autism. But, genetic mapping is a slow process and may take years or even decades to complete. Therefore, we must begin to look towards the environment. What in our world is triggering the autism gene, or combination of genes, to become active? This is the primary question researchers are posing now.

Why is it so difficult to determine a cause? Every child is unique with a different genetic make up as well as different environmental exposures. What causes autism in one child, may do nothing in another child. However, with good research we will be able to determine these environmental causes and begin to eliminate then from our house, our environment, and our world. Your help is needed…

I have developed a survey for mothers of children who have been diagnosed with autistic spectrum disorder (Asperger’s Syndrome, autism, and pervasive developmental disorder-not otherwise specified). This survey asks general questions about the mother’s environment and lifestyle choices during pregnancy. The mother will be asked to fill in each question for the time period during their pregnancy with the child who was diagnosed with autism.

The premise of this study is to look for trends between environmental exposures and autism. Specifically, this study explores multiple exposure combinations which might have occurred during your pregnancy. The goal of this study is to explore the possible environmental influences on autism.

To qualify for the study, the participant must meet the following criteria.

    • Your child must have been diagnosed with autism spectrum disorder including Asperger’s Syndrone,
    autism, and pervasive developmental disorder- not otherwise specified.
    • Your baby must have been considered full-term (born after 37 weeks).
    • Your child must have no other developmental diagnosis.
    • Controlled group – Have a child over the age of three with no known illness diagnosis.

Your participation in this study should take about 25 minutes. To begin now, please click the link: https://www.surveymonkey.com/s/3YBPGBT

For additional information about the study, please contact me at mm@mischellemiller.com

Thank you,
Mischelle Miller-Raftery, PhD
California Southern University, 2009

The Cause versus The Person

vehicle with Autism ribbonLast week, I wrote about Autism. For those who might not know, the symbol of Autism is a ribbon made up of puzzle pieces. I never thought much about this, and just thought it was another symbol, like yellow ribbons for support of the troops, or pink ribbons for breast cancer. Then, my friend Melody, whose 16 year old son has autism, sent me this note this week and asked me to talk about it on my podcast, and I thought it was appropriate to discuss it here as well:

“What started the discussion [on our message board for parents of Autistic kids] was the fact that some pretzel company is now selling puzzle piece pretzels for autism awareness month. When I spoke with Alex about it, it evoked a negative response and I learned quite a lot from it. One mom sent the “I am a person, not a puzzle” comment from a video she saw on line.

While looking on line, I noticed several websites dealing with autism that are even noted as “puzzle piece free” zones because they find it so offensive. It had honestly never crossed my mind that people with HFA would be so offended. I guess it was not just my son. The “I am a person, not a puzzle” statement makes so much sense. I guess I won’t be bringing home the cute pretzels or wearing my puzzle piece jewelry since it seems to offend my son and also a lot of other people.

I guess what we can take from this is to be sensitive to what we send home and to the classroom with a lot of the kids in the program as a parent group. Maybe they don’t like their high school teachers to get puzzle piece items for their gifts, etc. I remember something from Dan Gottleib’s book (Letters to Sam) about how there is a big difference in learning that you are different and from having to “feel” different all the time from other kids. It is OK to be different, but let’s not make our kids feel different. We wouldn’t think of having a wheel chair logo on items used in the classrooms of kids with physical disabilities, so let’s be sensitive to where and how we use the puzzle piece logos.

The logo is important to raise awareness in the community of autism and how prevalent it is, but maybe my child and his classmates do not need to see it all day on their pretzels, staff mugs, umbrellas, etc. They are already well aware of autism and all that comes with it and are trying desperately to fit in with everyone else. I thought I was doing the right thing to plaster that symbol everywhere. There is no need to raise awareness where everyone is painfully aware.

My home will be puzzle piece free after seeing how much it disturbed him. As usual, I have learned a lot from listening to my child.

Melody”

I think many people have never considered how this particular symbol might affect people with autism- they feel like people, not like some big puzzle to be solved or fixed by others.

How many times do people become icons?

We want to buy things to help our favorite causes, and show our support, ranging from the well-known ribbon campaigns to wearing other icons/symbols. But causes are more than just a brand. The “brand” really represents many individuals we are trying to help in a small way, by contributing our money to the cause, as well as helping to spread the word that this organization or social movement exists.

And it’s weird- how many pink ribbon encrusted gifts should you give to someone with breast cancer, until they feel they are becoming all about the disease, and less about them as individuals? Do soldiers really care about the yellow ribbon on the tree, or do they want you to do something else to try to make a difference? Does the awareness itself make a difference?

[Is this how teachers feel with the umpteenth apple themed gift- are they just wishing for a gift card from Borders, or maybe even a letter from a parent saying how well their child is doing and thanking them for helping them grow and develop?]

I don’t know that there is an answer to any of this. I am concerned that we try to put people into a little box with neat labels, and often lose the bigger picture, which is that they are so much more than any “cause” aspect of their life. How much do we try and participate and support causes through a piece of commerce because it’s easy, where getting involved personally is not? How much do these campaigns help?

Melody is right though- we would never think of selling wheelchair jewelry for other disabled students, or items with pictures of crutches/prosthetics to represent injured veterans. While the puzzle piece is not as blatant as this, it does show how others see people with autism, not how the people with autism see themselves.

So how do we handle this thorny issue? When is the symbol become insensitive, because it encourages a quick fix and guilt alleviation in place of real caring and action? how do we keep the people and the symbol from merging into one big blob, seemingly difficult to separate out?

What do you think?

by Whitney Hoffman


[tags]kids, children, parents, parenting, perspective, Autism, puzzle piece, negative connotation, respect, understanding, sensitivities[/tags]
Photo graciously provided by brainylagirl, through a Creative Commons license, some rights reserved

Moms in China- There is No “second chance”

Last week, I spoke to you about possibly raising money fro Ma Chen, a Chinese mother who has opened up a school for autistic children, and is trying to raise $10,000 to buy a farm so the children will have a place to go and work after they have finished school. We’ve opened up a ChipIn account, where you can donate any amount at all- even $5.00, and you can go to the site by clicking here. Through the offices of the Wall Street Journal in Shanghai, we’ve made arrangements to be able to transfer the funds directly to Ma Chen. I’ll be paying all the transfer/paypal/wiring costs, meaning 100% of any donation will go directly to Ma Chen and her school. You can also get a direct link to the original Wall Street Journal Article there, and follow our progress. We’ve managed to raise $505 so far, which is wonderful for the first few days of this project.

I spoke with a new friend, Tom, who helps get books and create small libraries for children in China, and has been living there for the past five years. We spoke about what it was like there, and how things are changing rapidly, but still, beyond the comprehension of many of us. Here is a brief summary of what we discussed, to give you some perspective on how much our help is needed for Ma Chen.

China does not have anything resembling a social safety net like social security. Your child, and how well they do is your 401K. It is expected that the children will take care of their parents. Add to this the fact that China went to a one child per couple policy back in the late ’70′s, and you can begin to appreciate that children who are now in their mid 30′s will be the first complete generation tasked with taking care of two elderly parents on their own, with no siblings to share the burden. If you have a child with a disability, especially one like Autism, often diagnosed once the child is a few years old, you have no care for yourself as you get older, nor anyone to care for your child. Children with mental disabilities can often end up in orphanages or as street children. Group homes and supportive work environments are, for all intents and purposes, non-existent.

Ma Chen has focused all of her energy in trying to help her child and others like her, and through the purchase of this farm, is trying to make it a place where the children can go and earn a living to support themselves, especially since it is unlikely they will be able to support their parents as society expects. Without having some place to go, if anything happens to their parents, there is no where for the children as young adults to go. They have no future. It would be like dumping autistic children in the middle of a major city with no money or no future- only the fates know what will become of them.

For what I think is a reasonable amount of money, $10,000 US, we can literally change the lives of these children. When I talk with my friend Melody, whose 16 year old son, Alex, has autism, she worries what will happen to Alex as well, once he’s out of school. Alex is enrolled in a jobs program that will help him learn skills until he is 21; he has social security benefits; and he has a sister that will help make sure he is okay. Melody and her husband have spent at least $10,000 just trying to make sure their estate plan is in place to help Alex when their gone, not to mention the money they have spent over the years on special education, medical treatment, therapy and more. Alex has a safety net in place that will make sure he is okay and able to support himself as he becomes an adult in a way autistic children in China simply don’t.

So my risk this year, my quixotic goal, is to spend the next 60 days trying to raise as much money as we can for Ma Chen and her school for autistic children in China. Ellen Zhu, from the Shanghai bureau of the Wall Street Journal wrote to me:

    “Ms. Ma Chen sends her most appreciation and best regards to all of you kind people.


    Dear Whitney: Thank you so much. And please wire your donations through Western Union … Ms. Ma can go to a post office or any branch of China Agriculture Bank to withdraw the money by providing the identifying information. All fees are on sender’s account. After getting the donations, Ms. Ma would love to send you her family photo and let you know how they will use the money.

    It will be my pleasure to continue help your communications with Ms. Ma. So please don’t hesitate to let me know if there is any question or anything I can help with from here.”

So, because of the internet, if we can all do just a small amount, we can make a huge tangible difference in the lives of another mom, a continent away, doing her best for her child and others like her. Mother Theresa said we can’t all do big things, but we can do small things with great love. I think this is our chance to take our community and reach out to make a real difference.

Tom said people in the US can’t imagine what it’s like in China, where things like a recession in the US and decrease in consumer spending can translate into the simple reality that people in China die, if they are out of work and have no other way to support themselves. We are becoming a truly global society, but the interconnectedness has its costs as well as benefits.

I’d also like to thank Stu, Megin, and all the other writers here on the GNM Parents blog, along with all the readers, for your support.

by Whitney Hoffman


[tags]parents, parenting, kids, children, China, autism, retirement, funding, elderly, parents, siblings, Chinese, Wall Street Journal[/tags]

Anything Is Possible

statue of AvalokiteśvaraI found a link to a story in the Wall Street Journal this morning that should convince every parent out there that anything is possible for parents with a will and determination to make the world better for their children.

Ma Chen has a daughter with autism. But she doesn’t live in the US, she lives in China. To put this in context, you need to remember two important things:

    1. China has severe restrictions on the number of children a couple can have and that sons are valued over daughters

and

    2. Chinese culture looks at children with disabilities as a sign that the parents did not lea a virtuous life, leading them to hide away people who had any sort of disability.

Because people are loathe to discuss any sort of problem or disability, there’s not a lot of information readily available for parents of kids with special needs. Ma Chen took her child everywhere to find out what was wrong, and finally got a diagnosis of autism. She searched the internet and found there are two schools for autistic children in all of China.

Let’s do some quick math. The autism spectrum disorder rate in the US is about 1/166. Let’s take a more conservative figure for China, and assume one child in 500 might have an autism spectrum disorder. With 1.3 Billion people in China, (July 2007 estimates) this means there should be 2,643,703 people with autism spectrum disorders in China. And the China Disabled Persons Federation estimates only 104,000 children have autism, so we can add denial to the list of problems Ma Chen faces. And we complain about lack of services in this Country! Two schools to serve 104,000 admitted cases of autism, but a figure that may include as many as 2.6 million people. It’s almost incomprehensible.

Ma Chen, a 35 year old mom, got together with friends and raised $200,000, opened three more schools and hired experts. This also meant she and her husband sold almost everything they owned to make this happen. Tuition is $200 a month, a huge amount when the average income in the area is $2,400 a year. There are low student to teacher ratios required to teach Autistic children, and the kids are making progress.

Ma Chen’s next step is to raise more more money to buy a farm so the children will have a place to work after they leave school. You can only imagine that supported workplace environments and sheltered workshops are something you don’t see every day in China, especially if the Government is loathe to recognize disorders exist. This would not only give the students a place to go, but could help contribute to the finances of the school in turn, making it easier to keep them open. As it is, the schools are losing about $10,000 a year, a huge amount in China.

This story moved me. It’s not unlike Sally Smith starting the Lab School in Washington, DC based on her child’s learning problems, and revolutionizing the instruction of learning disabled children in this Country. Ma Chen faces huge barriers, yet she is doing what she needs to do not only to help her child, but the children of others in similar circumstances. They don’t take no for an answer. They find a way to work things out and make the world different every day. They do what they have to do, and more to make a difference, one small step at a time.

Every time you feel like you are being victimized by the system, or can’t figure out what to do next, think about Ma Chen and the barriers she faces every day. And start to think about ways around the barriers, not how unfair the barriers are. Life can be unfair, but the people who win in the end are the people who don’t let the barriers low them down for long. They do for themselves, rather than waiting for the system to change for them.

As a side note, I am going to approach a friend to see if there’s a way to get a donation to Ma Chen to help in her effort. If you would be interested in helping, even with a small donation of $5, I know we can make a huge difference. Please comment on this post if you would be interested in helping, and I will investigate how we could help Ma Chen with her project.

by Whitney Hoffman


[tags]parents, parenting, kids, children, Autism, China, strategy, strategies, schools, education, risks, courage, possibilities[/tags]
Photo of Avalokiteśvara, the bodhisattva of compassion, graciously provided by [douglas japonicus], through a Creative Commons license, some rights reserved