Useful Article to Explain Autism Diagnosis to Kids

The Interactive Autism Network has posted a clearly written article designed to help parents discuss an autism spectrum disorder diagnosis with their child. The article, ASD Diagnosis: What Do We Tell the Kids? uses sensitive language and explanations that outline how kids with autism have many different profiles. It has information for siblings, too.

These elements all make the article useful for families who are looking to understand how to communicate with their children—and also makes it potentially valuable as a tool to help explain what is going on in your family to others, from grandparents and extended family members to friends who may have trouble relating to what's going on in your house.

The article explains:

"Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range. Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis."

The article encourages parents to "assess what your child already knows and is ready to hear" and to explain the news at the right level, to be positive about a child's capabilities and, overall, to tailor the information to a child's own situation while explaining that autism is "a different kind of disability."

"People have a disability when something isn't working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get 'stuck' on a behavior or topic, and they have a hard time understanding how other people think and feel—that's why sometimes it's hard to figure out what people want, or how to make friends. People with ASD need extra help with these things."

This article includes a list of references to research articles and additional resources including other articles from the National Autistic Society in the U.K., from the Autism Society of America, as well as links to resources for families, adults looking at what kinds of information to disclose to employers and others, the well known Sibshops support group for siblings of people with disabilities, and publishers who specialize in books about autism.

This is the kind of article, even if you are not ready to discuss anything, will help you lay the groundwork to study the issue so you can make informed decisions later. Take a look.

Autism Readings, Resources from Around the Web

I found these articles, resources and related items of interest for families of kids with autism spectrum disorders. I have found the web application Twitter to be a useful way to share interesting items online (at a higher frequency rate than I recently have been able to post articles on this blog). Below are links to the items, which you can also find at Twitter.com/autismbulletin. Below is a sampling from the past two weeks:

1. Autism Society of America: copy of E-mail newsletter
   
   
2. Autism Society of America: national conference, St. Charles, Ill., July 22-25
   
   
3. President Obama includes funding for autism in his FY 2010 budget proposal, via Autism Speaks - read more here
   
   
4. Alabama Autism Task Force report, recommendations here.
   
   
5. Agenda for Flutie Foundation for Autism conference April 7 in Norwood, Mass., read here.
   
   
6. Easter Seals campaign: Urge Congress to support families living with autism today: read here.
   
   
7. New from Newsweek: Autism: How Childhood Vaccines Became Villains
   
   
8. Toronto Jewish community holds disability awareness and inclusion events.
   
   
9. U.S. National Institute of Mental Health say stimulus spending to be guided by this strategic plan: read here.
   
   
10. Autism Speaks calls for $200 million for National Institutes of Health autism funding from U.S. stimulus package
    
    
11. RT @UKAF: The London Guardian recently featured the UK Autism Foundation.
    
    
12. Nevada considers autism insurance bill, news item via KRNV.com
    
    
13. Latest edition of Positively Autism newsletter with ABA-related articles.
    
    
14. New Hampshire Walk for Autism has set up website for event Oct. 4, 2009
    
    
15. From Change.org, college programs for autistic students
    
    
16. Wrightslaw newsletter on special ed funding in federal stimulus package
    
    
17. Autism insurance coverage advocates in Kansas continue to press case in state legislature
    
    
18. Autism programs take a hit, Boston Globe article on special ed budgets
    
    
19. Mass. events calendar for families with special needs kids
    
    
20. A journey of love and discovery as sibling of an autistic sister, from Portland Oregonian newspaper
    
    

Support Group for Siblings of Disabled Now on Facebook

The Sibling Support Project, a Seattle-based non-profit group that works to help siblings of people with disabilities, has started an online group on Facebook, the huge social networking website. You need to join Facebook's free service to become a part of the group. Learn more about that by visiting the SibNet on Facebook page.

This is clearly more of a benefit to the adult siblings of people with disabilities. It's a valuable reminder for families of children with autism spectrum disorders that the needs of siblings continue on as kids grow up.

If you pay attention, there's a stream of media coverage that gets at the issue. National Public Radio broadcast a piece on January 1 about Marissa and her younger brother Andrew Skillings, who is 11 and has Asperger's, a form of autism. You can read, see photos and hear about their relationship by clicking on "Coping with an Autistic Brother" at npr.org. Here's a quote from Marissa:

"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."

"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."

You can find more articles related to siblings on Autism Bulletin.

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

The Life of An Autistic Youth's Older Sister, In Her Voice

Sara Martinez is 17. She's a high school student in New York City. She is well spoken, loves music and acts as a second mother to her 14-year-old brother Diego who has autism.

If you can spare eight minutes, take the time to hear Sara discuss her experiences growing up since her family learned five years ago that Diego has an autism spectrum disorder. You can find the audio story via this web page at National Public Radio, which broadcast it July 24 on "All Things Considered." NPR picked the piece up from WNYC's show, Radio Rookies.

Sara explains that because her family is Mexican-American and her parents don't speak English, she acts as translator for them at school meetings, tutors for Diego doing his homework, interprets his speech for them sometimes, and also serves and a sounding board for her mother who reveals her deepest fears about Diego's well-being.

The short documentary also finds Sara finding some useful support from another sibling of an autistic teenager. "You shouldn't give up having fun, it's important," Kristen says to Sara.

After this chat, Sara says she does try to have more fun, and has begun to find it easier to express her feelings about her brother. "I know I will never have it easy," she says, adding that she understands she might have to care for Diego when he grows up. "But fun is not everything. I've become understanding, patient and so much more."

Sara's younger sister calls her a hero and someone she looks up to.

"I don't think I'm a hero. I'm just a big sister, trying to set an example," Sara adds.

In Special Autism Issue, Medical Journal Cites Economics, Early Diagnosis

The American Medical Association's Archives of Pediatrics and Adolescent Medicine published a special autism edition for its April 2007 issue that includes coverage of four important issues including the costs of autism services, a simple test for early diagnosis, the influence of autistic children on the development of younger siblings and an editorial citing the benefits of early diagnosis and treatment and more.

You can find good information about the articles in this issue by going to this resources website set up for the media. With one exception, the full-text versions of the articles are available online only to subscribers or for a fee. This article provides information on two of the articles. A future post will cover more information from this journal. Here is a rundown of the two articles, starting with the piece that is available free online.

1. The Costs of Autism Cases.

Autism costs society an estimated $3.2 million per patient for medical and other services and indirect costs including lost productivity taken over life of a person with autism spectrum disorder. That's according to Boston-based researcher Michael L. Ganz of Abt Associates and Harvard School of Public Health. Ganz's projections cover the life of a hypothetical group of people, born in 2000, and diagnosed with autism in 2003, and his report projects the costs out, in real dollars to the year 2066. He notes that the costs start off very high, then taper off and then "spike again in early adulthood, due to things like adult care and lost productivity. From the press release on Ganz's report:

“Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000,” Dr. Ganz writes. “Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0.”

Over an individual’s life, lost productivity and other indirect costs make up 59.3 percent of total autism-related costs. Direct medical costs comprise 9.7 percent of total costs; the largest medical cost, behavioral therapy, accounts for 6.5 percent of total costs. Non-medical direct costs such as child care and home modifications comprise 31 percent of total lifetime costs.

Because these costs are incurred by different segments of society at different points in an autistic patient's life, a detailed understanding of these expenses could help planners, policymakers and families make decisions about autism care and treatment, Dr. Ganz notes. "Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," he concludes.

Parents will note that Ganz concludes the results of his study suggests "that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood."

Noted. You can see an online version of this study, "The Lifetime Distribution of the Incremental Society Costs of Autism," including statistical tables, by clicking here.

Also noted: autism costs society more than $35 billion per year in direct and indirect expenses, Ganz writes.

2. A simple, early autism test: If baby doesn't respond to name at age one, watch for diagnosis of developmental delay.

Researchers found that 12-month-olds who don't respond when their names are called "may be more likely to be diagnosed with an autism spectrum disorder or other developmental problem at age 2" -- and so pediatricians should do this simple test at one-year checkups to rule out such a diagnosis or identify children who need further monitoring.

Baby responding to her name is "one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays," the researchers write in this report. The driver for this study is the potential for early intervention making a real difference for children diagnosed with autism spectrum disorders. See an abstract of the study, "A Prospective Study of Response to Name in Infants at Risk for Autism," here.

Researchers at the M.I.N.D. Institute at the University of California at Davis, the University of California at Sacramento, and the University of California at Los Angeles performed the study. They looked at children who were younger siblings of children who had autism, and therefore have a risk for ASD, and a control group. At age 12 months, the researchers write, 100 percent of the control group responded on the first or second name call, while 86 percent of the children in the risk group did.

Also see: "60 Minutes" reported about the M.I.N.D. Institute research into early diagnosis. See more about that here.

More Info: Support Groups for Siblings of Kids With Autism

More information arrived in response to "Ideas for Finding a Sibling Support Group" posted here March 8.

Don Meyer, director of the Sibling Support Project in Seattle, wrote that his Seattle-based group provides training and technical assistance to create "Sibshops" and that there are now close to 200 sibling support groups in eight countries. "We'd be happy to talk to anyone who is interested in creating a Sibshop or similar sibling program in their community," he added.

The Sibling Support Project provides this support to families of people with disabilities besides autism. The organization also provides support via an online discussion group for both young siblings and adult siblings of people with various disabilities. You can go to www.siblingsupport.org, or write to the group at: Sibling Support Project, A Kindering Center Program, 6512 23rd Avenue NW, No. 213, Seattle, WA 98117.

Some parents who responded to the earlier article on sibling groups mentioned that their children, older brothers and sisters of kids with autism, said they weren't interested in support groups. That's great, of course, but based on the literature at this Seattle-based project, it might be wise to revisit those answers some time in the future. In the meantime, it could be helpful for all parents who have both "typically developing" children and children on the autism spectrum to check out this article: "What Siblings Would Like Parents and Service Providers to Know." This is a list that was developed by Sibling Support Project participants in an online forum, which includes adults. Among items on the list:

* "The right to one's own life" -- parents and siblings should not make assumptions about the responsibilities of typically-developing siblings "without a frank and open discussion. It's a matter of self-determination.

* "Acknowledging siblings' concerns" -- brothers and sisters "will experience a wide array of often ambivalent emotions regarding the impact of their siblings' special needs. These feelings should be both expected and acknowledged." Noted: most siblings, because they are expected to survive their parents, will have the longest-lasting relationship with the family member who has a disability.

* "Expectations for typically-developing siblings." don't set them unrealistically high. Some siblings "feel that they must somehow compensate for their siblings' special needs. Parents can help their typically-developing children by conveying clear expectations and unconditional support.

* What kind of behavior to expect from typically-developing siblings: typical. That is, they will fight and treat their siblings with disabilities badly, like other kids do. Then comes this quote from the siblings' discussion paper:

When conflict arises, the message sent to many brothers and sisters is, "Leave your sibling alone. You are bigger, you are stronger, you should know better. It is your job to compromise." Typically-developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings.

Thought-provoking stuff, no matter what your kids' ages.

Ideas For Finding A Sibling Support Group for Parents of Kids with Autism

Carol from Mercer County, New Jersey, writes:

I am trying to form a sibling support group, but I am not having much luck with finding space to hold the group or anyone who will sponsor this type of group out here. I have a 10 year old daughter who is "normal" and my son was diagnosed with Autism, ADHD and Intermittent Explosive Disorder. She feels very alone and like no one understands her and it is heart breaking. Anyone have any ideas of how to get a sibling support group up and running?

Carol posted a comment in response to an earlier article, "What A Child's Autism Means to Brothers and Sisters." She is voicing an issue familiar to families who have a "typically developing" child and another child with an autism spectrum disorder: how do you find places where your child without autism can discuss her feelings in a safe, supported environment?

I've come up with a list of suggestions below. It would be very helpful if you, Autism Bulletin readers, could add your own suggestions to this list by posting a comment on this website, or writing to me at michaelsgoldberg AT yahoo.com, so I can share your ideas (anonymously if you wish).

Some suggestions for finding information about sibling support groups where you live:

Ask other parents, wherever you meet them, including the places listed below. Ask them about the issue of sibling support groups and listen to what they say. Some may know nothing. Others may lead you to the people and places you need.

Inquire at your autistic child's school. What have parents in past years done to get sibling support? Did the school host one? Have other parents found support through agencies that provide autism services to kids on the spectrum?

Check with autism service providers, including those that provide applied behavior analysis (ABA), or places that deliver other kinds of services to kids on the spectrum, such as occupational therapy. Even if the direct service specialist doesn't know, you can ask them to ask around their office, and other families.

Look up autism advocacy and support groups. In Massachusetts, the Autism Spectrum Division of the Office of Health and Human Services provides some funding for seven regional autism support agencies, including money to run sibling support groups. (See a list of the regional support groups on page 2 of this PDF document.)

Seek information at social service agencies. A recent New York Times Magazine story highlighted the sibling support group at the Jewish Community Center in Scarsdale, N.Y., run by a social worker and "fervent 'sibshop' advocate," according to The Times. There must be other similar efforts in other states. (See more about the magazine article here.)

Look into colleges and universities that prepare teachers to work with autistic kids. The demand for autism services is rising along with the prevalence of autism spectrum disorders. (See more on that issue here.) With preparation and support, teachers and teachers-in-training can be good sibling group facilitators -- and learn a lot about autism from these siblings who live with their brothers and sisters on the spectrum. Researchers working on educational models for children on the spectrum have opened schools on campus -- including the Douglass Developmental Disabilities Center at Rutgers, the State University of New Jersey in New Brunswick. They should know something about sibling support groups, where to find them or how to start one.

Ask at advocacy groups. The Autism Society of America has a helpful article online about helping siblings understand what autism means, written by Sandra Harris, executive director at the Douglass Center at Rutgers. Find the article here. The article notes that the well-known advocacy group, New Jersey Center for Outreach and Services for the Autism Community (COSAC) has an active sibling support program. The article also mentions The Sibling Support Project, established in Seattle in 1990, as a national effort "dedicated to the interests of over six million brothers and sisters of people with special health, mental health and developmental needs." See more at www.siblingsupport.org. Notably, this group trains sibling support group facilitators. And it provides support for adult siblings of people with developmental disabilities.

What A Child's Autism Means to Brothers and Sisters

The New York Times Magazine on Feb. 18 featured a story about the Perry family from suburban Austin, Texas, zeroing on what it means for 14-year-old Tarah Perry to have 16-year -old autistic twins, Jason and Justin, as older brothers. See an online version of "Her Autistic Brothers," here.

This is a story worth reading for parents thinking about the effects of their autistic child's disability on their other kids. The writer, Karen Olsson, was able to spend a lot of time with Tarah Perry and hear what her life has been like, how her brothers' development has affected her. She both worries about them being bullied (she has witnessed incidents at school), pesters them to apply deodorant, and can help them adapt to an unsettling situation in public (such as the overstimulating lights in a hotel lobby). Here's a telling passage about Tarah:

All her life, she has been not just their younger sister but their de facto older sister, sometime translator and mom's right hand. ... When they were young, Jason and Justin spoke only about 50 words, and those in odd, high-pitched voices. But according to Tarah's mother, Jennifer: "It was like she knew what they wanted when I didn't, and she would help me figure it out. Tarah was mother hen to these boys. I probably shouldn't have put her in that position, but oh, my God, she helped me so much."

The story goes on to say that research into the effects of disabled children on their typically developing siblings is inconclusive. Some kids are affected negatively, others are influenced positively -- to be more sensitive to people who are different or disabled, for example. And others, there is no discernible difference. Those general trends apply to families with an autistic child, however, The Times notes that autism is a particularly challenging reality for siblings since it is a difficult condition to understand for anyone, not just children, and the behaviors of the child with autism can emerge without warning. Autism also can preclude or limit the social interactions that make sibling relationships so important while growing up. (There's also the fact that a child's autism, depending on the severity and stage of development, can influence an entire family's routine, such as trips outside the house.)

So while research about sibling support groups is inconclusive, the story takes readers on a visit to one at a Jewish Community Center in Scarsdale, N.Y., which suggests that giving children the chance to talk about a sibling's sometimes frustrating, confusing disability is a good thing. At the "sibshop," a 6-year-old girl named Ruthie explains that her brother is bothered by beeping noises. It troubles her, she says, "because I don't want my brother to be like this, and it makes me feel sad that he has to be afraid of that." The group chimes in that she can't blame herself for her brother's behavior. "I only help when I need to help," says a boy in the group.

You don't have to look very far for that poignant sense of responsibility that siblings can feel toward autistic brothers and sisters. All you had to do was watch the Feb. 18 episode of "Extreme Makeover: Home Edition" during which the TV crews rebuilt the home of the O'Donnells, a family with six children, including five on the autism spectrum. Who was crying the most when the crew showed up at the family's house in Austin to begin the makeover process? It was Meaghan, the 9-year-old who is not on the spectrum, and works hard, the episode explains, to help her mom.

The Austin American-Statesman visited the O'Donnells to watch the show with the family. You can read that story online here. (Registration required.)

Siblings of young children with autism also can play a pivotal, positive role in home-based programs using the principles of Applied Behavior Analysis. Read a recent Autism Bulletin story, "What Makes An Effective Home-Based ABA Provider," by clicking here.