Welcome to Autismvoice, the voice of parents of children with autism spectrum disorders, including autism, PDD, PDD-NOS, Asperger's Syndrome, and other autism spectrum disorders. This autism blog and podcast is a place to share ideas, resources, and experiences - to find solutions to specific problems, such as what interventions work best, how to successfully advocate, ways to manage family life, to enjoy the blessings and solve the daily issues that arise from raising a child on the autism spectrum. I hope you enjoy this forum and find it helpful. - Sandra Sinclair www.autismvoice.com , www.thehappypath.com

This Wed at 8pm eastern, I'll be interviewed by the Moms Helping Moms series leader, Renee Alexopoulos. We'll be talking about social marketing, starting a business from home, and parenting a child with autism. How's that for a mix of subjects? Should be fun!

Call details and info on the Moms Helping Moms series below:

The call will be Wednesday, 5/21 at 8pm (ET), 7pm (CT),
6pm (MT), 5pm (PT) California

The phone number to call in is 712-429-0700 participant pin 518775 (followed by the # key)


Sandra Sinclair


Autismvoice- a newer facebook group for parents of children with autism:
http://www.facebook.com/group.php?gid=12360026251

You can also follow Sandra on Twitter at:

www.twitter.com/sandrasinclair for business and social media marketing

www.twitter.com/autismvoice for issues related to autism.


You can read about Sandra and the other speakers in the series at www.successfulmomshelpingmoms.com.

I love this article from Lisa Jo Rudy about what NOT to do after your child is diagnosed with an autism spectrum disorder.

You know, I remember the panic and sadness that I felt when I first found out about my son's diagnosis, and all of the "mad rush" things that I did to get knowledgeable and to try to make good decisions for him. To some extent, that's necessary, but remember when you go into this, that many people in the world of educating autism have only had training in one intervention, and really don't know much else outside of their intervention, although they believe their intervention is the best. Keep that in mind when looking around.

When talking to other parents and teachers who have learned more than one intervention, you will find that almost invariably those who have more than one intervention under their belt will have a broader world view of autism interventions and will understand the benefits of using more than one over time.

My experience has been that every intervention we have tried has helped our son, each in a different way. All have been effective for what they can do, and no one intervention covers all the bases. A customized approach is usually what's called for, despite what a lot of professionals trained in one method might say. 

The research available on all autism interventions is really not that well-done as yet. Some interventions say that they're research-based, but if you really look into their research, you will find that in the end, it's very difficult to do a good study.

For instance, the children in Dr Lovaas' group (only 19) were cherry picked for verbal ability by age 3 and normal IQ scores. Nonverbal or children who didn't score well on IQ didn't get in. Most people don't know that.

And even then, only 40% went on to regular school.

Don't get me wrong- ABA is a very good, very solid intervention for teaching tasks, imitation, and initial focus. The key to a good experience with ABA (or any intervention) is the TEACHER, and to know when to stop using it. ABA is best done with a younger child who has no skills whatsoever. The mistake many make is to do it harshly, or to keep doing it long after it's lost its effectiveness. 

We did ABA on our son in the beginning, had a fabulous, very fun teacher, and my son learned a lot. She broke a lot of rules, but you almost have to with ABA in order to get a good result with ABA. Verbal Behavior is a newer, more fun form of ABA that  a family should consider if they are thinking about ABA.

But ABA and Verbal Behavior are poor when it comes to teaching flexible thinking, social abilities and conversational skills- the skills that your child is severely lacking in and can't be learned in a rote fashion. For social abilities and communication, RDI, Son-rise and Floortime are far better interventions.

And no one beats a good speech therapist for teaching communication skills to your child.

And for healing your heart spirit and your family's heart spirit, nothing beats son-rise.

Regarding sensory difficulties, either having a good occupational therapist, or reading up and implementing how to help with this in your home, such as "The Out of Sync Child Has Fun" or "Just One Bite" for food textural and taste issues are great ways to help your child as well.

For your child, you may need stuff from some or all of the above, some done at the same time, and some in sequence.

I also love  her idea about "window of opportunity", the big urban myth. Someone introduced this idea and everyone latched on. Remember, "window of opportunity" an opinion. If your brain couldn't continue to develop, no one would ever recover from a stroke or brain injury. No one could learn anything new after age 5. Please! All of us have learned tremendous things long into adulthood. Your child will too.

And regarding the "rush to cure"-- remember that most children recover partially, not totally from their autism, so even though you don't know your child's potential, the most important thing is to value him or her now, as he is, and not what you wish he was. He will feel whether you truly accept him or not as he is now. Remember, he or she is a person, a child, first, who just happens to have autism, not the other way around.

Sandra Sinclair, www.autismvoice.com

The Option Institute has started conducting free webinars by computer and telephone. If you would like to tune in, go to www.son-rise.org and call them or send an email correspondence@option.org to ask to get their emails. The webinars are weekly, Thurs at 12-1:30pm eastern US time, and are free to attend.

Sandra Sinclair

www.autismvoice.com

As I was listening to Jenny McCarthy last night on Larry King Live, I was struck by the huge communication gap between parents and physicians. I can't imagine how these two groups will ever learn how to communicate without an interpreter.

The panel included 3 physicians and Jenny McCarthy. It was a battle of sorts, between  the professional, medi-lingo-savvy, detached physicians, and a passionate, angry parent of a child with autism, who believed her child was hurt by vaccines. In the end, neither party heard the other at all.

The problem is that both sides have almost totally different priorities. Both parents and physicians want the best for the children, but that's where the similarities end. Physicians want hard evidence, supported by a formal study before making a move. Physicians don't take the sequential anecdotal evidence that parents bring as significant evidence. Parents are motivated to protect their children from  harm, and aren't willing to wait for the bureaucratic glacier to move while their children become statistics- this is where the problem lies.

So where is this glacier? It's the CDC. Some say the CDC is prioritizing protecting our children from acquiring infectious disease at the expense of causing autism in some individuals, some say the CDC is protecting the vaccine manufacturers from litigation and the resulting fallout for the drug companies, but the CDC says that it just doesn't think there's sufficient evidence to support that vaccines can cause autism. Until there's a different global viewpoint at the CDC, parents will have to continue to push for vaccine reform.

What do I think? I think that autism may very well show up in some individuals as a result of immunization injury. I don't think that happened to my son, as he was showing signs of autism very early on, before he had any vaccines. However, I think that it's entirely possible that vaccines could trigger autism in some individuals, especially with all the vaccines our children have to take early on. I'm not 100% positive, but it seems like the evidence is certainly pointing in that direction.

The vast majority of children who are vaccinated don't become autistic, which is the main reason why the CDC states that vaccines don't cause autism. But there's one theory out there that could burst that belief bubble... The theory that there may be a genetic predisposition in some individuals to develop autism, much like the genetic disposition to develop cancer. And it goes like this...

We all know people who have smoked like crazy, lived to 100, and haven't developed cancer. Yet others get cancer at 30, smoking or not. With cancer, we all know that it's a question of genetic disposition. For instance, if you possess a genetic predisposition for cancer (like a lot of people), you can set it off really easily by smoking. If you don't have that particular predisposition, you can smoke like a chimney all your life, and you probably won't get cancer. Likewise, if you have a genetic predisposition for autism, you may set it off with a vaccine, and if you don't have that disposition, you probably won't.

Is this theory correct? I don't know, and even all the people who've convinced themselves that it's true (like Jenny McCarthy) still don't unequivocally know either. But it sounds quite feasible to me, and I think that in time we'll all find out-  sad but true, that vaccines can indeed, cause autism in some people.- Sandra Sinclair

www.autismvoice.com

Do you ever wonder why we as  parents worry about our children so? It's because we don't know what the future holds. We don't have any crystal balls lying around so often, we can get caught up in the concerns for the future. How many times have your thoughts rushed ahead to 5, 10, 20 or more years from now, wondering how your child is going to do into adulthood? Here's the rub- you don't know, and you have little to no control. So our challenge as parents is to try to prepare our children as best we can now, and live in the present, not the future. It's a challenge, no? But I firmly believe it can be done, with a little mental discipline.

Just see if  you can take a moment and really take your child in in all his / her beauty and individuality, right now. Don't get caught up in what you need to change, what needs improvement, or how you can fix him. Just appreciate him for who he is, right now. Practice this for a few moments every day. Give yourself this gift- of learning to be present and appreciative. This is something I'm starting to do each day- to set aside concerns, even for a few moments, and appreciate my child. It helps. Gratitude is a great healer and soother for the soul.

Here's a great article about things you can do to help prepare your family for the holidays. There's some great tips in this article:

http://www.autism-society.org/site/PageServer?pagename=holiday_tips

 

 

Here is Jade's video, and how she recovered from autism, thanks to her parents and Son-Rise volunteers. This is a story of a little girl who lost her skills and then regained them again, and is now living a normal life. Not all children can fully recover like this, but I hope that this shows the world that there is no such thing as false hope for autism. - Sandra Sinclair, www.autismvoice.com

 

 

The website for Son-Rise intervention is www.son-rise.org .

Well, it finally happened. Oprah did her first show on autism yesterday, and it was truly a great experience to watch it.

I really think she did the subjects of family issues and public awareness great justice, and tried to present autism from a family's point of view, instead of a clincian's-- a refreshing change. I'm grateful for what she did, and am so glad that they featured the parents from the Autism Speaks video. It was a touching, inspiring, and informative piece for all of us.

The Autism Speaks video is here:

 http://www.autismspeaks.org/sponsoredevents/autism_every_day.php 

It's a great piece about how autism can and does affect many families, but I caution you that if you are really upset about your child's autism, that it's not filled with a lot of hope, and  you may not want to watch it. I think that the mothers in the piece were understandably truly grieving about their child, and had never considered a different, more optimistic and positive view about their child's autism.  We all can do that, and I only wish that a positive outlook was more evident in the press.

Oprah mostly featured families of children that were normally developing and then lost skills, which is less common than children that never gain the social and communication skills to begin with.

That might cause the public to think that most children with autism start out normally and lose skills, which is not the typical autism scenario. Also, not enough time was spent on the warning signs of autism in early development, because they were featuring mostly those who had lost skills at 18-24 months.

Overall however, I was very moved and think she did a great service for the autism community at large, by creating some wonderful public awareness about autism and  how it manifests in daily life. I have a lot of respect for what Oprah does, and this show is no exception.

The following is from the Autism Society of America's reporting of the new figures. --------- Bethesda, MD (February 8, 2007) The Autism Society of America (ASA) welcomed the new CDC studies on the prevalence numbers of autism spectrum disorder (ASD) in the United States as tremendously significant data that will help the cause of improving the lives of all those affected by autism. In data collected from its Autism and Developmental Disabilities Monitoring Network (ADDM), a population-based, multi-state surveillance network that surveyed 8 year olds in 2000 and 2002, the CDC found that the data confirm that ASD prevalence affects approximately an average of 1 child in every 150. The data represents 10 percent of the U.S. population of 8 year old children.   more »