Sandra Sinclair interviewed by Moms Helping Moms

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.

What NOT to do when your child is newly diagnosed…..

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

Autism awareness- Jenny McCarthy on Larry King Live

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

A real challenge

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.

Jade's Autism Recovery Video- The Son-Rise Treatment Method

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 .

Oprah on Autism

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.

1 in 150 Children Have Autism in the US

Well, I actually think it's more prevalent than this number, but here's the latest report from the CDC.

Sandra Sinclair

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.
 
ASA believes the CDC numbers are tremendously significant.  “Finally, we can end the debate on the prevalence of autism in our nation and focus on getting the services and supports the families need,” said Lee Grossman, ASA president and CEO. “Autism is a treatable lifelong condition that affects tens of millions of Americans today.  It is time to aggressively address this national health crisis.” The CDC is recommending public health actions to improve early identification of ASD.
 
The CDC study includes children with behaviors consistent with autism, Asperger’s and pervasive developmental delays not otherwise specified (PDD-NOS). The data came from 14 sites in five states (Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia). The study also found higher prevalence in boys than girls (a range of 2.8 6 boys to girls, depending on the state) and no statistically significant difference among non-Hispanic whites and non-Hispanic black children.
Colleen Boyle of the CDC noted that the study showed the age of diagnosis (at between 4-5 years of age) was much later than the age at which developmental concern was registered (before 24 months), underscoring the need for earlier identification of autism.
For information on support, services and identification with ASA, please visit http://www.autism-society.org/.

——————Original Text from the CDC reads as follows…What is the prevalence of autism?CDC’s Autism and Developmental Disabilities Monitoring (ADDM) (link to ADDM page) Network released data in 2007 that found about 1 in 150 8-year-old children in multiple areas of the United States had an ASD.

Since the ADDM sites do not represent a nationally representative sample, the prevalence estimates should not be generalized to every community in the United States. Although accurate for the areas we studied, rates may be higher or lower in other areas. However, these prevalence estimates can help communities project how many children may have autism for planning and identification purposes. They can also be used to provide for more appropriate interventions for children with ASDs.
What do the ADDM network results tell us about the prevalence of ASD in the United States?Results from CDC’s ADDM network showed the average ASD prevalence among states participating in the project was 6.7 per 1,000 children in 2000 (6 sites) and 6.6 per 1,000 in 2002 (14 sites), or approximately 1in 150 children. Most sites identified between 5.2—7.6 per 1,000 8-year-old children with ASD in 2000 and 2002. There was some variation with ASD prevalence significantly lower in 1 site (3.3 in AL) and higher in 1 site (10.6 in NJ).  Prevalence was stable from 2000 to 2002 in 4 of the 6 sites that participated in both surveillance years, but increased slightly in GA and significantly in WV, indicating the need for ongoing monitoring of prevalence over time.  These data provide important information on the prevalence of ASD in areas of the United States and will be used to examine trends in the occurrence of these disabilities over time.

Son-Rise New Frontiers Program

I highly recommend the Son-Rise program for autism.  Son-Rise, like RDI, is very empowering for parents, because as a parent you realize how very important you are and how much influence you really have on your child's progress.

Most children with autism respond well to Son-Rise, because the program establishes trust quickly with the child and as a result, they are usually more willing to interact with you more and accept more because of that level of trust and interaction. I also love how there are no limits or expectations put on how far your child can go with this program. There is a healing that happens in your heart and mind for your child and for your family regarding what autism means to you through Son-Rise, and I'm very grateful for their approach.  

Shortly before Thanksgiving, John and I were fortunate enough to attend the Son-Rise New Frontiers Program in Sheffield Massachussetts.

Son-Rise, like RDI, focuses on the interpersonal, communication and flexibility goals first, then uses those skills to build other friendship and conversational skills, and focuses lastly on academics, reasoning, self-help, and motor skills.

New Frontiers is an advanced training program that builds on the foundation of the Son-Rise Start-Up. In New Frontiers, we learned specifics on how to establish program goals, and the techniques on how to achieve them, as well as looking at our own beliefs about what's possible.

We learned how to use both our child's activities and our activities to achieve our goals – to build length of interactional attention, to increase flexibility, to build language and communication skills, and ultimately to build friendship and conversational skills.

This is not done in a static way, but rather in a more flexible way, through interactive play and later on adding role plays, always adding to what we're doing and what we've done before. We learned how to keep growing and expanding our goals and activities to make them gradually more and more complex and changeable over time so that a child can learn how to deal with the world effectively within our program first.

We also learned how to be students of ourselves- regarding our feelings, attitudes and beliefs about our child, ourselves, our program, and how our child exists in our world. This is the only program out there that deals with the head and heart of the parent, and the people working with your child. You learn how to learn from yourself and from your child, how to examine and question your beliefs about what's possible and what's important, and how to ultimately be in a good place with all of this, while always trying for more.

The foundational idea of Son-Rise is total acceptance of the child as he is, while always extending kind invitations for more growth. Son-Rise goes with the child instead of against the child, so the child feels some control and trust in working and playing with you, and that helps the child to feel safe about gradually allowing new things in. Consequently, there are very few “no's” at the beginning. Once the child has mastered basic flexibility, social, and communication skills, that's when more “no's” start to come in.

In my experience, when a child is learning the basic stuff about how to be flexible, how to trust another, how to communicate and how to interpret and respond to the world around them, that you can use Relationship Development Intervention (RDI) or Son-Rise. However, just speaking from my own experience, Son-Rise is probably the easiest and quickest way to get through those really tough early stages with the least amount of resistance from your child.

I'm so glad that we looked into Son-Rise. It's a highly practical and healing way to remediate a child's autism.

Sandra Sinclair, www.autismvoice.com