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

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 »

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

One of the more difficult parts of parenting a child with autism,
and something that can be hard to talk about, is the embarrassment you may feel about your child's behavior. As parents, we're not supposed to feel embarrassed about our children, yet we're also taught that children should behave, and if they don't, it's probably a result of faulty parenting.

 

 

This belief system can be very disempowering, especially for a
parent of a child with autism, because it's impossible to control
everything your child does. At those times when your child is
acting strangely or falling apart, you can feel embarrassed or
angry about the judgment you may feel from others. As a result, you may feel pressure to do something against your instincts, such as punish your child, just to save face, to look like you're in
control, or to assuage your anger.

 

 

In reality, just like the sadness issue, how you feel about others'
opinions is completely up to you. Believe it or not, you can choose
to feel however you like when your child throws a tantrum in the
mall. You don't have to feel unhappy just because your child is
unhappy, or because others may judge you or your child. It's
possible to empathize with your child in the situation while
remaining happy and calm, or at least neutral and calm.

Next time you're in such a situation, ask yourself this question-

"Which attitude would best serve me, my child, and this situation?
Happy and calm, or embarrassed and angry?" My guess is that happy and calm would be the better choice in most situations, but
ultimately your mindset is up to you. You cannot be influenced by
others' opinions, your child's feelings, or anything else, unless
you decide that you can.

 

 

Now let's turn for a moment to the person who is judging your
child. This is someone who is judging a child with special needs.
What exactly does that say about them?  In reality, their judgment doesn't define you or your child at all. Instead, their judgment
defines them as someone who needs to judge. It has nothing to do with you or your child.

 

 

If your child could do better right now, he would. In time he will
do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.

 

Sandra Sinclair

www.autismvoice.com