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.

A Note About Autism Bulletin on Twitter

If you are reading news and information online, you undoubtedly have heard something about Twitter, the online information service where users share short messages of 140 characters each. You don't have to post your own messages on Twitter to find it useful, but you do need to sign up for a free account to follow what others say. I recommend it as a good way to keep up to date, because many media outlets, organizations and bloggers -- including this one -- are posting information on the service.

Autism Bulletin's Twitter feed is here: http://twitter.com/autismbulletin. I post links several times a week to items in the news, information about events, information from advocates for people with autism and other disabilities and other information I find useful as a member of a growing global community of citizens who care deeply about people with autism spectrum disorders.

Some recent examples:
* There's a conference, Advancing Futures for Adults with Autism, including a July 15 briefing for members of Congress, happening in Washington D.C.

* Another conference is coming up, August 7 and 8 in Greenwich, Conn., for people who have siblings with disabilities. Find more information at the International Sibling Conference website.

* The Lovaas Institute has posted a partial list of iPhone, iPod Touch and iPad applications designed to engage young children with autism using the principles of Applied Behavior Analysis (ABA).

* The Autism Society of America, in advance of its conference this week, recently recognized six advocates for people with autism and their families. Read more about the 2010 Autism Champions.

If you follow Autism Bulletin on Twitter, the messaging service pushes these information microbulletins out to you automatically. I also have posted a box on the home page of Autism Bulletin which lists these messages, or "tweets" with the latest one on top of the list.

That's the information part of Twitter. What's interesting about what observers and participants in this web publishing world call social media, and what's interesting about Twitter in particular, is that there's a loose sense of community that builds among participants. If you sign up for the service, you can "retweet" or re-broadcast messages you find interesting; you can send messages to others on the service. Or you can observe what happens when you share information.

Notice, for example, the list of more than 2,000 "followers" of Autism Bulletin on Twitter (that's a tiny number compared to the more than 100 million users who have registered worldwide, according to Wikipedia). Even in this small community, you will find:

* Parents
* People who have an autism spectrum disorder diagnosis
* Educators who work with autistic kids, including some who are working to start new schools
* Advocates
* Doctors
* Siblings
* Grandparents

There are people from many countries who speak many languages. Some are veterans of the autism community, while others are newcomers to having this diagnosis in their lives. It's another reminder, among many, that you are not alone.

Health Care Reform and Autism Coverage: Some Holes, Notes Autism Speaks

Autism Speaks, a major advocacy group, has a helpful post explaining some details of the health care reform bill signed this week by President Obama. In essence, the group praises the direction of the health care policy embodied in the bill and cites some direct benefits for families who are seeking services for people with autism. But the article also notes there are holes in specific coverage options, and cites these holes as reasons to continue to seek reforms.

On the plus side: the new law will end the practice of insurance companies denying benefits based on pre-existing conditions, including autism spectrum disorders. But the law won't mean that insurers must provide behavioral services such as Applied Behavior Analysis. From the article:

Not all insurance plans will be required to cover behavioral health treatment. That’s because only certain types of health plans will be required, beginning in 2014, to cover the list of essential benefits, including behavioral health treatment. The types of plans included under this provision are: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange. Existing coverage, plans offered in the large group market outside exchanges, and self-insured plans (plans under which an employer assumes direct financial responsibility for the costs of enrollees’ medical claims, or sometimes referred to as “ERISA plans”) will not be required to provide the essential benefits package. This last exception is especially significant because 57% of workers who are currently covered by their employers’ health benefits are enrolled in a plan self-insured by the employer.

See the article by clicking here: Health Care Reform: What does it mean for the Autism community?

The White House has links to information about the health care law and a link that leads you to the text of the law known as H.R. 4872, Health Care and Education Affordability Reconciliation Act of 2010.

A Survey for Parents of Kids with Autism to Help Design Parenting Courses

At Lesley University in Cambridge, Mass., educators are planning a set of courses specifically designed to help parents of children with autism spectrum disorders. Elizabeth Stringer Keefe, the coordinator of the Severe Disabilities Graduation Special Education Program at Lesley, has posted a survey for parents to fill out online. It's anonymous, takes about 10 minutes to answer 10 questions, and the responses collected about the kinds of services children are receiving, and what concerns parents have, will guide the course designers.

Click on this link to take the survey.

I learned about this survey after writing to Elizabeth to ask about a day-long program on April 10, 2010, at the university, Realizing the Full Potential of Students with Asperger's Syndrome. The program is for special education administrators, teachers, occupational therapists, speech and language pathologists, psychologists, other educators as well as parents. The fee for the event is $65 and proceeds go to benefit the Asperger's Association of New England, an important advocacy and education group based in the Boston area.

The program includes four speakers, including Ellen Korin, a special educator and author of Asperger's Syndrome An Owner's Manual; Stephen Shore, a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome, among other works; Karen Levine, a developmental psychologist and instructor at Harvard Medical School who co-founded the Boston Children's Hospital Autism program; and Ross Greene, associate clinical professor of psychiatry at Harvard Medical School and author of The Explosive Child.

This Asperger's program is the third annual speakers event Lesley has organized. Here is what Elizabeth explained to me in an e-mail:

Having been a classroom teacher, a consultant (I still consult to schools in the area of ASD) and now a university professor, I realize more than ever that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, unfortunately, and requires a specific skill set and understanding. So, calling for specialized training for those working with kids with ASD is one initiative of my program.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, I made a second initiative of the program the commitment to provide low-cost professional development for anyone working with this population.

And lastly, a third initiative of my program is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for both the teachers that leave my program and for other colleges and universities. So, the last 3 events I have hosted for the series are charity events for a non-profit, with 100% of proceeds going to support the organization (my time is donated as well). This year I also asked Ellen Korin, and Drs. Levine, Greene and Shore to donate their time and they graciously obliged.

One consequence of the rising incident of autism spectrum disorders is an increase in the number of parent education opportunities. Finding the time to attend one of these events can be difficult—but it's essential to check out the opportunities near you, if only to understand what's going on. Especially in challenging seasons as the parent of someone with autism, it helps to see that these events are happening because it demonstrates that you are not alone, that there are people working to provide information, ideas, approaches to help.

One last point about educational events: if it costs money to attend, make sure to check out the source who is providing the information, to see if it is reputable. Or, simply seek out an event that's free of charge to attend (for it's possible you will have to pay for child care, already).