Reprise: Why Families with Autism Need to Celebrate Mothers Often

Last year for Mother's Day, I posted this piece on Autism Bulletin: Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions. Click on the link to read the piece.

In short, parents, and especially moms, work long and hard to help their kids. It's important to take time off, away from this demanding life, so you can rest, recharge and get back to it. Respite helps you help your children.

Some respondents to this piece explained, understandably, that getting time away from the family can be difficult to arrange. An unscientific survey on this blog showed that most parents took no time off at all.

When was the last time you took a break, for at least an hour? And what did you do? Walks count. So do coffee shop meetings.

Please feel encouraged to share your thoughts.

Caring for Siblings of People with Autism

A young man wrote to Autism Bulletin recently to express his frustration about his adult sister's life. The details I will keep private, but the gist is that he feels that his sister, though employed, is capable of much more than the duties of her entry-level job. In addition, he is frustrated that she continues to demonstrate a narrow set of interests in her life.

A few things struck me about this note, and I want to share them with you and then ask for your comments and advice for siblings.

1.) Parents need to pay attention to the emotions and needs of siblings of our kids who have an autism spectrum disorder.

Of course we don't forget about our typically developing, or developed, children as we spend so much energy on our children with autism. It's a good idea, though, to add to our long to-do list: look for ways to meet siblings' emotional needs.

There are support groups for siblings available in many areas. Sometimes those groups are designed specifically for siblings of people with autism spectrum disorders, and sometimes they are for siblings of people with various disabilities.

You may find it useful to do other things, like special outings, activities geared specifically to the sibling's interests and passions. The key is to set aside time for this.

2.) The sibling's needs don't stop after childhood.

As this young man noted, he is thinking a lot about his adult sister. He consults with his parents, but he has his own ideas, wishes for his sister and frustrations.

3.) There is something good going on here.

This young man was very frustrated and took the time to write to me about it. When I wrote back to this young man, I started off by telling him that his sister is a very lucky person to have a brother who cares so much about her.

That good fortune is a blessing, really, for all of us. It shows that people who grow up in a home where the family is a group of caring people can make a difference. I know that my outlook on life, on the world, on people has changed since my family began learning about autism. I can only hope that we find more people with the capacity for compassion and understanding as we continue along. In that sense, this young man's e-mail to me made my week.

Also see:

Ideas for Finding a Sibling Support Group

More Info: Support Groups for Siblings of Kids with Autism

More on siblings on Autism Bulletin

How to Find Autism Health Insurance Information

In the United States, insurance coverage for autism services such as Applied Behavior Analysis (ABA), speech therapy and other services, varies by state. A number of Autism Bulletin readers have written recently asking how to find information about health insurance coverage in their area. Here are some tips:

1.) Get in touch with autism advocacy groups in your state.

There are power in numbers when advocating for public policy changes, and advocacy groups such as the Autism Society of America and Autism Speaks have chapters in many areas around the nation. Even if the chapter in your state or metropolitan area doesn't have any one working on this issue, you can ask them if they know someone who is.

There is an active national network of advocates working on this issue and it pays to tap into their experience. For example, a group in Arizona has been advocating for autism insurance coverage and worked with Autism Speaks to create a document listing the reasons it makes sense, both economically and from a public policy perspective.

These groups can also help you understand what the state law is right now in your state. Some states, such as South Carolina and Texas, have passed laws that require health insurance plans to provide some coverage for autism services. You can read about a number of these states by looking at the Autism Bulletin archives on health insurance issues, or using the search box.

2.) Check with your health insurance provider about specific policies and terms that apply to your family's claims.

You should understand what coverage you have now, and what limits there may be for that coverage. For example, some health maintenance organizations may limit the number of occupational therapy visits a patient is allowed to claim; once you reach that limit, payments for every visit after that could need to come out of your pocket.

Side note: while you are waiting for policies to change, you can check to see if your employer offers an arrangement called a medical flexible spending plan. This is a federal tax policy which allows you to set aside money from your paycheck, up to $5,000 per year, for medical expenses. You can use this "pre-tax" money to pay for autism services. The effect is to stretch some of your dollars to pay for these services. The Internal Revenue Service has an information page here. And make sure to review with your tax adviser what using this money means for your income tax returns.

3.) Call your state representative and ask what's going on.

Armed with information from advocates and your health insurance policy, get in touch with your state representative or state senator to let them know you are interested in what's going on with insurance coverage for autism.

Understand that a number of states have set up special commissions to study the issue of autism spectrum disorders, as a first step to figuring out what to do. So you can ask if your state has done one of these studies, and where to find a copy.

Some states have legislators who have personal experience with autism spectrum disorders. Every state should have lawmakers who care about healthcare, special education, and/or people with disabilities. So if you find no help at your state representative's office, figure out who may give you a more sympathetic hearing. Just be aware that insurance companies and people who disagree with you are doing the same thing.

Project Vote Smart has a very helpful website that helps you find your elected representatives by your Zip Code.

4.) Be an engaged citizen and participate in our democracy.

All of these steps involve paying attention and being willing to get involved in a political discussion. It's easy to feel like there's not much any one family, any one parent can do, to help move the global or national needle on autism services. But as the saying goes, many hands make a big load lighter.

So read the news. Ask questions. Find others who care about this issue and talk about it with them. And see what happens.

Observers of this issue also will note that while representatives of the insurance and business lobbies have lined up to oppose more insurance coverage for those with autism in states like Pennsylvania and Texas, this is not a partisan issue. All you have to do is read about South Carolina, where a Republican lawmakers overrode the governor's veto in 2007 to pass autism insurance legislation. And who led the charge, to get them to do that?

Three families, led by three moms.

A Reflection on Autism Awareness Month, 2008

A confession: Years ago, when my family first began to learn about autism, I didn't think much about "Autism Awareness Month." It seemed like an innocent gesture, but also a naive wish for good will and public recognition for a condition that wasn't well understood. And, it seemed to me back then, it was one effort (among many) to grab a spotlight for a public tired of such things.

I have changed my view. This month, in the midst of some demanding times at work (which have left me fewer chances to post to Autism Bulletin), I didn't have much time to think about autism awareness. And yet the issue found me, as I took a walk near my home yesterday and saw a sign hanging at the public library proclaiming to passersby that it is Autism Awareness Month.

I realized this Autism Awareness Month is an essential symbol, and, potentially, a supportive lifeline to parents who must know: You are not alone.

You are not alone when you struggle with a challenging behavior problem, at home, at a family gathering, a house of worship or at the mall.

You are not alone when you find yourself sitting with people who have trouble understanding what you are going through—be they friends, family members, educators or health care professionals.

You are not alone when you have to make difficult choices, be they decisions about finances or careers, or just about how you would spend family time—choices that many other families are not put in a position to make.

And you are not alone when you find creative reasons to celebrate. Good behavior? Celebrate! Avoiding bad behavior? Celebrate! An advance in swimming, reading, eating, sitting at a table, brushing teeth, pretend play, peer communication, [fill in your favorite here]? Celebrate!

And so we are not alone when we recognize that it's Autism Awareness Month, and give credit to the efforts of advocates around the world who have not only elevated the profile of autism as an urgent public policy issue but have helped us understand we are not alone.

Some examples, from my e-mail in-box:

• April 2 was World Autism Awareness Day, an effort involving Autism Speaks, a leading advocacy group. Organizers scheduled events in more than 20 countries and at the United Nations in New York to discuss autism spectrum disorders, remove the stigma associated with the diagnosis and build societal supports for families.

• The head of the Autism Society of America rang the opening bell at the NASDAQ stock market on April 3.

• Toy retailer ToysRUs continued its efforts in past years by highlighting products that are suited to kids with disabilities. They worked with Autism Speaks to create the list. Clearly, this is geared to make sales for the retail chain, but they did choose to create this list which you can find here.

Those were just some of the events. Maybe you noticed them, or maybe you noticed media coverage about them.

Then again, maybe you didn't because you have too much to do, and you barely have time to do much of anything except to keep your life going. That would be understandable.

Just know that there are people like you doing the same.

Audio: Interesting Show on Autism at "Studio 360"

"No matter how hard he tries he knows he can't fit into the NT [neurotypical] world."

That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.

A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)

Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:

Other parts of the show discuss an art project organized by the M.I.N.D. Institute, and discussions of Amanda Baggs, a well-known autistic video blogger and neurodiversity advocate, and the film Autism: The Musical.

Find the Studio 360 website with a writeup of this episode by clicking here.