Yesterday, I asked readers on Facebook and this blog what they'd want in a "dream" parent support program.  Overwhelmingly, readers said they wanted someone who could answer their questions, help set a course for their child, and offer consistent support as they walk a complex and exhausting road.

The reality is that that sort of person simply doesn't seem to exist.

For autism parents, it's easy enough to find someone who will tell them what to do.  There are support groups loaded with well-meaning individuals, all of whom will tell you what direction to take.  Unfortunately, these fellow parents have no idea what's best for YOUR child or YOUR family - only what's worked well for them.  Often, the "genius" of a therapist who changed little Joey's life will leave little Billy cold - because the two boys, despite their shared diagnosis, are as different as night and day.

And while many parents and therapists will gladly steer you toward a particular diet, supplement, treatment, therapy or school that they personally believe in with all their heart, there doesn't seem to be anyone out there who can look at YOUR child, understanding the breadth options available, and make meaningful recommendations.  Even tougher to find would be someone who then HELPS you find and fund the therapy, select a school, manage the special education process, and cope with the financial and emotional complications that are an inevitable part of raising a child with autism.

One reader described their ideal coach or counselor in this way:

An advocate/advisor/counselor assigned to our family THE MINUTE WE RECEIVED DIAGNOSIS. Someone to help us navigate the morass of red tape/waiting/fear/frustration/guilt/more red tape etc etc. Someone to let us know what to expect, how the process is designed to work, what usually happens and so forth. Someone who would tell me to stop reading some of those scary books/getting lost on the web so I wouldn't cry myself to sleep at night thinking of all the pain other families deal with and that we might have to as well.

So here's the job description - please let us know if you're out there!

Wanted: Autism Counselor or Coach for individual family

Qualifications:

• In-depth knowledge of autism spectrum disorders through the lifespan, including a full grasp of the breadth of symptoms and their implications for behavior, education, development, relationships, employment and daily living.
• Broad and deep knowledge of treatments for autism, including but by no means limited to ABA, Floortime, RDI, SonRise, special diets, supplements, "alternative" treatments of all sorts, occupational, physical and speech therapies, auditory integration therapy, PECS, augmentative technology, and so forth.  Must not only understand the treatments but must also be able to match appropriate treatments to individual children, guide parents in finding top-notch therapists, and support the process of finding and funding all treatments.
• Broad and deep knowledge of special education, including but by no means limited to special education law, IEPs, transition, Extended School Year, specialized schools, programs, camps.  Must also have an ability to review curricula and/or behavioral programs to determine their appropriateness for an individual child.  Must have the skills to observe a classroom situation, determine its effectiveness and provide not only suggestions but training and support for educators.  As needed, must be able to guide parents through mediation or "due process."
• Background in grief therapy, couples therapy, adolescent psychology and child psychology.  Able and willing to listen and support parents, siblings and individuals with autism as they cope with the complexities of life on the spectrum.  Able to match families, as needed, with high-quality, low cost respite care.  Willingness to intervene with in-laws a plus.
• Extensive experience in managing the red tape surrounding medical and educational entitlements, programs and options for children, teens and adults with autism.  Deep knowledge of adult living options, financial planning, guardianship and related legal and personal concerns.
• Must be flexible and creative, warm hearted but tough.

Salary negotiable, but not too high (given the high cost of autism treatment!)

What am I missing??

Wanted: Knowledgeable, Open-Minded, Supportive Autism Coach originally appeared on About.com Autism on Thursday, September 30th, 2010 at 08:45:21.

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I've noticed that the Autism at About Dot Com Facebook page seems to be getting some terrific responses to short questions I pose each day.  I'm guessing the reason may be that it's quick and easy to respond with a few words - and then move on to other activities.  With that in mind, I'll reposting some of the same questions right here - hoping blog readers will also enjoy the opportunity to share a thought for the day.

Today's question:

If you could design a "dream" parent support system for families living with autism, what would the system provide?

What's Your "Dream" Parent Support System for Families Living with Autism? originally appeared on About.com Autism on Wednesday, September 29th, 2010 at 10:17:17.

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"My child is going to start taking ADHD medicine. What do I say about why he is taking it? How do I talk with him about it?" --About.com Reader

Tips for Talking About Medication

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How Do I Talk About ADHD Medication With My Child? originally appeared on About.com ADD / ADHD on Monday, September 27th, 2010 at 11:04:07.

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"My 12 year old daughter, who has ADHD, has been more and more difficult - dramatic and moody - over this last year. She has also started her menstrual cycle and is a major challenge right before her cycle. Can hormonal changes affect ADHD symptoms?" --About.com Readers

Read about ADHD and Hormonal Changes

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Can Hormones Affect ADHD Symptoms? originally appeared on About.com ADD / ADHD on Monday, September 27th, 2010 at 10:49:32.

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"How do you tell the difference between a child with ADHD and one who is simply active and full of energy?" --About.com Reader

Click on Understanding ADHD to read response.

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Understanding ADHD... originally appeared on About.com ADD / ADHD on Monday, September 27th, 2010 at 10:42:19.

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What do families with autistic children want from the American government?

The answers aren't always obvious.

On the one hand, most families with autistic kids would be unable, without government entitlements, to treat or educate their children.  Well-regarded behavioral treatment can cost tens of thousands of dollars each year, and tuition for a special needs private school could be as high as $50,000 per year (NON-residential).  Many kids with autism also seem to have medical issues that require expensive treatments and medications.  As a result, many parents of kids with autism support government funding for both medical and educational programs for their families - and quite a few would like to see more, not less, funding for health and education.

On the other hand, many families are extremely unhappy with the options and programs available through funded sources.  Quite a few parents would rather not vaccinate their children - yet must do so in order to enroll their kids in school.  Quite a few parents are displeased with the special education programs made available without cost through the public schools, often for very good reason.  Plenty of families are unable to access even "evidence based" treatments from their children through typical healthcare insurers.  As a result, many folks living with autism want more choices and more freedom to treat and educate their children as they see fit.

Of course, it's really not feasible to provide full federal or state funding so that parents of children with autism can do whatever seems best to them for their children with autism.  Such an approach would be impossible to monitor, and rife with fraud.

What that means is that many families with kids (or adult children) on the autism spectrum are stuck with some hard choices.

Should they push to support and even enhance the existing medical and educational systems with all their flaws, since the systems do provide at least a modicum of service and programming?  Or should they support candidates who push for greater freedom of choice, even if all that freedom is likely to come with less funding?

It's a tough call.  Where do you stand?

Politics and Autism Make Confusing Bedfellows originally appeared on About.com Autism on Monday, September 27th, 2010 at 08:06:21.

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Whose problem is autism?  Who should pay for the needs of families with autistic members?  Why should anyone outside the autism community give a !@#$ for someone else's disabled kid, teen, or adult child?

Yesterday, we heard from two very different voices.

In one corner, Sharron Angle - who is running against Harry Reid in the Nevada Senate race - managed to anger autism advocates across the nation yesterday with a callous approach to health care.  Not only did she suggest that autism benefits should be denied because of their expense to the general community, but she also suggested - by making "air quotes" around the term "autism" - that autism itself is a fictitious disorder. An article on a Fox News website cites Angle:

"You're paying for things that you don't even need, they just passed the latest one is every, everything they want to throw at us now is covered under autism, so that's a mandate that you have to pay for," she said, making air quotes around the word "autism."

Harry Reid, of course, is making the most of Angle's statement, calling his senatorial rival "callous" and "heartless."

In the other corner is glamorous star Kate Winslet, who has just started up a foundation to support innovative housing options for adults with autism.  While Winslet isn't the only celebrity to support the cause of autism with a special foundation, she may be the only one to do so with no personal connection to the issue.  In fact, she says, her decision to create the foundation came as a result of discussing an autism-related documentary with her own typically developing daughter.

Even more impressive than Winslet's choice to create a foundation focused on others' needs is her choice of where the money will go.  It's easy enough to give money in support of adorable children in need of help.  It's much tougher to think about the needs of adults with disabilities.  Yet according to the Press Association, "[Winslet] plans to establish innovative living communities that offer the opportunity to learn to communicate effectively, education, job training and recreational activities, within a supportive social network.

Winslet's new organization, the Golden Hat Foundation, is partnering with Sir Richard Branson's Virgin Unite. Virgin Unite brings together money and people to tackle international issues, and, according to the Golden Hat Website, "...focuses on great ideas and areas where they feel there is a gap where their entrepreneurial energy and convening power can make a difference."

Whose Problem is Autism? Sharron Angle Vs. Kate Winslet originally appeared on About.com Autism on Saturday, September 25th, 2010 at 10:04:10.

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Just a quick note to readers: one of my listserves just shared a fabulous blog created by a Connecticut law firm.  It's a collection of short articles providing parents with tips, hints and information about special education law, including help with interpreting statements from schools like - "oh, that's a relatively weak area but we're working on it with him," and "I'm afraid her test scores don't qualify her for special services in that area."  Having gone through JUST this type of experience, I found the info to be very helpful indeed!

On a related note, the more information we share about autism education, the better off our kids will be.  Please, please share your reviews of your child's public  school programs so that others can gain from your experience:

Review Public Schools' Autism Programs

Has your child with autism attended a public school program designed for kids with autism? What did you like or dislike about the school, the program, the staff, the outcomes? Tell other parents about your experience and suggestions!

Join the conversation on Autism at About Dot Com on Facebook!

Great Resource for Parents Coping with Special Education Law originally appeared on About.com Autism on Thursday, September 23rd, 2010 at 09:38:38.

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John Robison Elder is the author of the bestselling memoir Look Me in the Eye, which describes the author's early years and his discovery as a young man that his "differences" were diagnosable as Asperger syndrome.  He's also a member of the board at Autism Speaks, and a regular blogger on all things autism-related.

Recently, John wrote a blog on the subject of genetics and autism, with a focus on the promise of genetic testing as a tool to determine whether very early treatment might be appropriate for a newborn child.  John suggests that we will someday be able to determine whether an individual's autism is likely to be very disabling or only slightly disabling, and even whether a child is likely to become an autistic savant or a disabled individual with intellectual challenges.  Here's how he describes the possible thought process that might go into making a decision about treatment:

I used the example of a kid who was a social cripple, friendless; but a computer genius. If we had a treatment to turn on social awareness for that child, should we do it? He would surely be happier, but at what cost? Would we be turning the future Einstein or Newton into a jolly friendly sales manager? What are the ethical and social implications of such a power?That remains a valid question at the upper end of the autism spectrum. However, those kids won't have the genetic errors that lead to profound disability. If we treat children who have a genetic abnormality that leads to an IQ or 50 and total disability, we do not make any ethical tradeoff at the other end of the range. Instead, we give a child who might have grown up crippled a chance to develop reasonably normally.

Here, John raises a whole slew of complex questions that are unlikely to be easily resolved.  Assuming that we really are able, some day, to determine a child's ability to do well on an IQ test on the basis of a genetic test, and that IQ testing is a true determinant of an individual's potential to make significant discoveries or make other contributions to the human condition:

• Should intelligence be the basis for determining whether an individual receives or does not receive treatment for a genetic difference?
• Should an intelligent individual with autism be denied autism treatment on the basis of the good he/she may bring to humanity, despite the known issues inherent in his or her milder form of autism?
• Assuming that we DO deny treatment, what then do we do to ensure that such an individual will actually provide humanity with the outstanding insights we hope for?
• Should a less intelligent individual receive genetic treatment for autism on the basis that he or she would not amount to much without the treatment (and thus nothing of value would be lost as a result of the treatment)?
• Is the ability to do important intellectual work (presumed to be likely in the case of a genius with Asperger syndrome) more significant than the ability to live a happy, well-adjusted life?  And...  how do we make such a determination?

At this point in history, of course, we have no genetic test for autism - and even less ability to test for types of autism.  Nor do we have treatments available to reliably treat and cure autism if it's caught at a very early age.  I personally doubt that such tests or treatments will be available in the near to middle future.  But the questions Robison raises are likely to determine whether we seek out such tests and treatments - and for whom genetic tests or treatments will be available.

My personal opinion is that genetic testing for intelligence, creativity or other culturally preferred qualities is a dangerous path to walk.   To begin with, the decision that intelligence is the most important factor in determining human value is a little distressing.  Then, of course, there's the question of abortion - which Robison doesn't raise, but which is always lurking in the shadows of such debates.

But then there's the question of whether or not we actually have any real ability to predetermine what an individual will achieve on the basis of genetics alone.  Many people - autistic or not - overcome great disabilities to become extraordinary human beings.  Many people - autistic or not - are bright, wealthy and highly educated, yet wind up giving back little or nothing to society.  Intelligence, while it's a fine thing, doesn't determine whether or to what degree an individual will be successful as a scientist, an inventor, or even as a human being.

This is a tough question, though, and there's no doubt that there are many sides to consider.  In the case of autism, we are on the horns of a dilemma.  On the one hand, we want the best for our children and loved ones who live with the symptoms of ASD.  On the other hand, we don't want to somehow limit or qualify the incredible array of qualities that make up human nature.

Where do you stand on this thorny issue?

Ethics, Genetics and Autism originally appeared on About.com Autism on Wednesday, September 22nd, 2010 at 10:48:51.

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It's never easy to be an autism parent.  Whether you're at home, at school, or in the community there are always challenges.  Sometimes, though, we parents become so accustomed to meeting challenges head on that we can actually damage our child's reputation - and his or her opportunities for community inclusion.

Why does this happen?  How can an advocating parent possibly have a negative impact for his or her child? In a sense, we're trained to be as tough and assertive (or even aggressive) as necessary. And sometimes, aggressive advocacy is the only way to go.

For example...

• In the American school system, parents are placed in the position of actually competing for scarce resources.  If Jimmy gets a private school placement, the district may not want to provide the same high-priced program for Johnny.  Johnny's parents, understanding this, prepare their case carefully and hire a lawyer.  They know that the district is required, by law, to provide an appropriate education - and they'll get him the education they feel he needs, come hell or high water.  Since Johnny's parents understand the IDEA (Individuals with Disabilities Education Act) as does their lawyer, and the district is unwilling to shell out thousands in court fees, there's a very good chance that their very assertive advocacy will result in the best possible setting for Johnny.
• In the American health care system, parents are placed in the position of having to fight for a timely evaluation, battle for insurance support for basic treatments, and insist upon the healthcare they believe they need.  Sometimes that means being disliked by the clinic, the doctors or the billing staff - but if it results in action, a little negative feedback is a small price to pay.
• In the world of autism therapy, it can be overwhelmingly difficult to learn about, select, set up and fund treatments.  Even worse, parents and clinicians disagree with one another about the "best" treatments.  That disagreement is often vociferous and angry.  A parent who allows herself to be buffeted by every point of view may be drowned in a sea of opinions.  In the long run, most parents pick a point of view and stick to it like glue.  Sure, they may lose friends - but so be it.

In the community, though, everything is different.

You'd like the local recreation department to include your child with autism in after school soccer by changing their approach to coaching and practice.  You want your child's piano teacher to learn the basics of ABA so she can interact appropriately with your child.  You feel the kids in Boy Scouts aren't reaching out to your child or including him fully, and you want the Pack Leader to intervene.

So you leap in, as you always do, with both feet - and an assertive or even aggressive attitude and tone.

The problem is, there's no underlying system in the community that supports your expectations.  Yes, most community organizations would like to do their best for your child, and yes SOME organizations do have an obligation under the ADA to do so within "reasonable" limits.  But no, there is no IDEA laying out parents' rights relative to the independent piano teacher - and there's no school district to enforce your expectations if they're not met.  Your child's piano teacher, coach or pack leader is not required to become an autism expert, and your child's fellow Boy Scouts are under no obligation to make your son a part of the "in" group.  You can sue the YMCA if it actually turns your child away, but the Y is not responsible for ensuring that your son finally learns to swim.

Worse, perhaps, than the fact that you may be unsuccessful in your very assertive attempts to change the world for your child is the fact that you, the parent, may actually make things MORE difficult for your child.  When the grapevine paints you as an aggressive, difficult parent it may become difficult indeed to find warm, supportive, accommodating settings for your child.  The art teacher who would have been glad to work with your child may shy away from dealing with you.  The pack leader may share with her friends that "Johnny's a lovely boy, but look out for his parents - they're ferocious!"

If you don't deal with the community as you deal with the schools or the medical system, how DO you ensure that your child is included appropriately?

Often, the answer is modeling or proactive measures.  Instead of expecting the community leader to know or learn appropriate inclusion techniques, offer to show him or her how it's done - and lend a hand.  Instead of assuming that the coach will know how to make an effective visual teaching tool, make one - or two - yourself, and share them with the coach (or the whole league).  Rather than walking away and expecting that the instructor, teacher or leader will just know what your child needs, tell that person what your child needs up front; write it down; and if there's a question, be prepared to step in to help. Not only will you build good will, but you'll be able to tell AND show best practices for your individual child's success.

When it comes to kids with autism, there's no one size fits all answer to community inclusion.  You're your child's best advocate - but in the community, you're also his cheerleader, his support team and his problem shooter.  As a parent, of course, you really are all that and more, whether your child's autistic or not.

Community Inclusion and The Autism Parent Trap originally appeared on About.com Autism on Tuesday, September 21st, 2010 at 10:44:58.

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September 19-25, 2010 is Turnoff Week -- a week that encourages families to go for one week without screen time. Give it a try! Turn off the television and the computer. Put away the video games. Encourage your kids to get outside and play and explore other entertainment options. We parents could probably use a little less screen time, as well. So join your kids by riding bikes together, going for a walk, playing a game of four square with the family or geting out the sidewalk chalk and drawing together. Then come inside and play a game of UNO, talk about the day, and just enjoy being together unplugged.

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It’s Turn Off Week! originally appeared on About.com ADD / ADHD on Monday, September 20th, 2010 at 12:54:41.

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"ADHD just doesn't LOOK like a disorder. How do we know it is real and valid?" --About.com Reader

Click on How Do We Know ADHD Is Real?

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ADHD is Real originally appeared on About.com ADD / ADHD on Sunday, September 19th, 2010 at 15:04:16.

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