Discussing Autism

This weekend I received a bi-monthly update from my b5media managers that included information on how to effectively search out your blog status, name, and how people link back to your blog. You would think that after over a year of blogging that I would know how to do this but unfortunately, I didn’t.

Thank goodness it was easy (simply typing in a few keywords like my name or blog title into search sites like googleblogsearch.com, ask.com, and icerocket.com). What I found on one of my searches was a writer/father who was pretty disgruntled about my post about AJ’s institutional autism that I had posted at Chicago Moms Blog and the Chicago Tribune. (more…)

One of my favorite reads, Mommy Dearest, wrote Saturday about her Aha Moment, the moment you most remember after receiving your child’s diagnosis.

When did you finally accept the diagnosis or have you not accepted it yet? I remember sitting on the living room couch, talking to my husband about how our son would never be attending prom or playing in Little League Baseball with the other children in the neighborhood. He would never be watching a girl walk down the isle or give birth to a child and he would never experience life like we have…with the “traditional” rites of passage. (more…)

Wait, so Autism is not the end of the world?

Since we adopted our son from Russia in the summer of 2005 we have struggled with him. From his fingertips to his toenails the child is a medical mystery and developmental mess. (more…)

AJ has never been one to pick up a ball for the fun of it…he usually picks up one in anger or disgust and then throws it. But man, does he have an arm. A strong left one and an even stronger right one.

According to eBeanStalk’s Physical Therapist, Deanie Barth, “A child does not simply wake up one day with the ability to accurately catch and throw and kick a ball, it is a learning process just like any other required skill.”
(more…)

So, apparently I am “jumping on the bandwagon” in saying that my son has Institutional Autism. I have clearly stated from the very beginning of this blog that AJ does not have Autism, that he has not been diagnosed with Autism but rather, that he has been diagnosed with Institutional Autism.

I stated that, hmmmm, May 3? I believe that was long before all this Jenny McCarthy news, the Autism Trial, the Vaccine Debates, the Lead Toy Scandals (that cause toxicity), and so forth. Right?

Institutional Autism is not a classic autism, at least according to the leading Neuropsychologist in the field, Dr. Ronald Federici. It is a learned behavior disorder that mimics autism. When we consulted (via email) Federici two years ago he was very clear in stating that AJ met his criteria for Institutional Autism. However, he also stated that for a full diagnoses we should meet with him. We have also had another neurologist confirm that belief.

While abandonment and institutionalization most certainly has a profound impact on a child’s ability to develop trust, bonding and security in newly adoptive relationships, an emphasis needs to be placed on the integrity of the post-institutionalized child’s higher-level neurocognitive abilities with a comprehensive assessment regarding the availability of “innate skills” needed for bonding, attachment and the development of appropriate social interactional and reciprocal behaviors. While many children with post-institutionalized attachment disorders may display a combination of unattached or even indiscriminant behaviors (Ames, 1997), many post-institutionalized children display a very intense pattern of behavioral dyscontrol; aggression and violence; destructiveness to self and others; a lack of cause-and-effect thinking; indiscriminant affections to strangers as evidenced by being inappropriately demanding and clingy; or a pattern of social withdrawal, isolation and maintaining a self-stimulating posture. A principle complaint from parents adopting an older child is that the child may be out of synchrony with their environment resulting in difficulties in providing management, structure and organization.

The bold text above is what we experience on a daily basis (except affection to strangers)…along with
Severe Sensory Integration
Social deprivation
Self stimulation (ie: stimming)
Severe oral motor and feeding issues
Central Auditory Processing Issues are surfacing
Uncontrollable Rage
Age Regression (AJ is 4 but emotionally and mentally 2)
Dyspraxia related problems

Now, it is clearly stated in this article that “that institutional autism is not a medical condition, but rather a description of certain patterns of behavior that look like or are similar to what is observed in children with “real” autism. Some autistic-like behaviors may be, in fact, an adaptive behavior in an institutional setting, but become mal-adaptive in a family situation. And if institutional autism is a learned behavior, than adoptive parents have a hope that their child can learn new behaviors. And, indeed, there are instances when adopted children get rid of behaviors usually associated with the autistic spectrum.”

I have always questioned whether AJ has Organic Autism or if his issues are strictly the result of his time spent in the orphanage, or if his birth mother is to blame. For all I know that could be the real reason (and I am certainly not naive to that). If one would have taken time to visit the blog, or gather background information instead of jump to conclusions and claim I was “jumping on the bandwagon”…they would know our situation. Its nice to know that people do research though…

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Right On, Autism Diva, Right On!

There is no epidemic, is there…as a culture we just shoved everything under the rug, holed everyone up in institutions, and ignored that it all ever happened.

One day in 1957, when Jeff Daly was 6 years old, his little sister Molly, disappeared.

Every night at dinner, he would ask his parents the same question, “Where’s Molly?”

Every night, he says, he received the same answer: “Stop asking about Molly.”

Decades later, Daly learned that his parents had sent Molly to a state institution nine days before her third birthday. Nearly 50 years later, Daly found his sister and made a documentary about his search.

Wouldn’t that be nice? To know your parents put your sister away? Woudn’t it be better to know that an entire society did that?

There’s a timeline that explains that in 1967 about 195,000 people, half of whom were children were institutionalized for being disabled, many of them would have been diagnosable as autistic by today’s standards. Many of the were treated brutally and died in those institutions of the actions of drugs and of neglect and disease.

One of the most horrific statements made in one of the video clips was that people in corporate American just did not have retarded kids, so they sent them away and pretended that they didn’t. Another statement was that no one wanted to be known as the mother of a “retard.” These were the peers of Molly’s parents. The unmitigated gall of such thinking! The hardheartedness. Who are these people who thought they were so special? How sad that they ever got caught up in the whole corporate rat race and sold their humanity to it. To give away a child–a baby. Handing over a baby for forever would be most women’s worst nightmare, most father’s too.

The parents of autistic kids today who are demanding a cure for their autistic children (not all are like this) are themselves children of this very generation of people who would callously send their children away to be warehoused and pretend they did not exist any more. It’s just what was done. So, there’s nothing there in the culture, no way to deal with the shame of having a autism spectrum child, and these days there aren’t so many people who will participate in such a sham as to pretend a disabled child who lived with the family for three years from birth on, did not exist.

So it really is possible that there is no epidemic…that it has been there all along.

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A few days ago Kerry Ng at The Autism Blog wrote an article on how vitamin D deficiency is related to autism. The Telegraph was the first to report this article Telegraph in England where they have had the worst midsummer weather on record. But why does that matter?

Because sunlight gives us Vitamin D. Without Vitamin D our bodies can suffer from rickets, multiple sclerosis, diabetes, and possibly, autism.

Children from orphanages like Little Pickel are at a great risk for a vitamin D deficiency due to lack of sunlight as well as proper nutrients. Additionally, according to the Telegraph they are at a greater risk for Type 1 diabetes and MS.

However, the risk of MS, diabetes, and possibly autism, can be decreased by having birth mothers take vitamin D during pregnancy and by giving infants vitamin drops that contain vitamin D.

The Vitamin D Council tends to agree with the UK theory.

The theory that vitamin D deficiency, during pregnancy or childhood, causes autism is just a theory. However, the theory has a plausible mechanism of action, explains all the unexplained facts about autism, subsumes several other theories, implies simple prevention, and is easily disprovable—all components of a useful theory. A genetic lesion (abnormality) in some component of the vitamin D system—a lesion vitamin D’s unique pharmacology could overcome—would explain why monozygotic (identical) twins are highly affected while fraternal twins are not. Varying brain levels of activated vitamin D during later life would explain why some identical twins get severe disease while others are barely affected. Falling vitamin D levels over the last 20 years due to sun‑avoidance explain autism’s rapid increase in incidence during that same time. The very different effects estrogen and testosterone have on vitamin D metabolism may explain why boys are much more likely to get it than girls are. Lower vitamin D levels in blacks may explain their higher rates of autism. The vitamin D theory has tenable explanations for all the epidemiological features of autism.

What is interesting is that when the American Medical Association Council on Scientific Affairs told the American public to start avoiding the sun (specifically pregnant women and young children) they also did not warn us of the potential vitamin D deficiencies that would cause.
Currently, they still recommend the same daily units of vitamin intake. Dietary Reference Intakes: For Calcium, Phosphorus, Magnesium, Vitamin D, and Fluoride (Dietary Reference Series)

Why is vitamin D so important?
According to the Vitamin D Council it aids in normal brain development, stimulates brain cell growth, and maintain normal blood levels of calcium and phosphorus. It also helps to maintain strong bones, thus the connection to rickets.

Major Food Sources
Cod Liver Oil
Salmon, Mackerel, Tuna (although children are not advised to eat fish, especially salt water)
Fortified Milk
Margarine
Pudding prepared with fortified Milk
Ready to eat cereals fortified with 10% of the daily allowance
Eggs (vitamin D is in the egg yolk)
Liver
Swiss Cheese

When does a Deficiency Occur?
The Office of Dietary Supplements states that a deficiency can occur for 1 of four reasons.
# when usual intake is below recommended levels (Milk allergy, lactose intolerance, vegetarianism, and strict breast feeding without supplementation)
# when there is limited exposure to sunlight
# when the kidney cannot convert vitamin D to its active hormone form
# when someone cannot adequately absorb vitamin D from the digestive tract

In this case, my son had 3 strikes against him when we adopted him; he was not given the proper nutrition and had a lactose intolerance and no vitamins, he had limited sun exposure, and he had a stomach bacteria called H Pylori which damaged his intestinal lining and caused a “leaky gut”. When we brought him home from Russia at the age of 26 months he had a mild case of rickets (seen only in his protruding forehead), and was also very anemic.

Do children with rickets show signs of autism?
Personally, YES. Little Pickel, my son had mild rickets and he showed many signs of autism, albeit Institutional Autism, but only upon getting adequate nutrition. Before that he was quite calm and sedated. Once he started eating he was able to “come out of his shell”.

This is Mangan’s answer from Vitamin D Council:

If vitamin D deficiency caused autism, then children with vitamin D deficient rickets would be at greater risk for the disease. To the best of my knowledge, no studies have looked at the psychiatric profiles of children with vitamin D deficient rickets to look for evidence of autism. However, children with rickets are more likely to be hypotonic (flabby muscle tone), display decreased activity, and have developmental motor delays. Hypotonia is common in children with autism, as is decreased activity, and developmental motor delays are the rule

All that said, does Vitamin D link to Autism or is this just the new fad in theories?

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Crash into me! Boy and I getting sick of this! Summer is supposed to be fun but for some reason Little Pickel is crashing all over the place. I don’t mean crashing into things…I mean crashing into me on purpose!

Kids who are proprioceptive sensory seekers are sometimes called sensory seekers. High functioning autistics or kids with disorders like PDD or institutional autism like Little Pickel crave active movement; pushing, pulling, pushing, crash landings, lunging into walls and people. The love input to the muscles and deep pressure. These are the kids who do great with weights and weighted blankets, vests, joint compressions, lap weights in the classroom, chewies, etc.

However, these are also the kids who engage in self injurious behaviors like hitting, biting, head banging, poking eyes, and pulling hair because it feels good. They crave deep pressure and sometimes pain. Little Pickel did some of those but he also hurts others in efforts to feel pressure for himself. Hitting and kicking others brings him sensory input and when he needs it he seeks it anyway he can.

So, to solve this?

The extremely aggressive child, like Little Pickel, needs an outlet. He needs heavy work all the time.

Here is a great list of Heavy Work activities at one of my favorite sites.

And, some products that we have in our home already:
Kid-Riffic Jump Smart

Rocket USA Bozo Bop Bag

Moon Shoes

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Being new to this field I have had to answer many questions from family and friends about Little Pickel’s behaviors and medical issues. Many of their questions tend to fall into the myth category, aka what I like to call the type of information media and popular science has spewed at us for generations. What I would like to do here is clarify a few of those myths.

1. All autistic children have one particular talent or field in which they excel. Unfortunately because of the tremendous spectrum scale this is untrue. A small number of children with autism have very high IQs and exhibit such “splinter skills,” as they’re called, but most children with autism do not. Sadly, about 8 out of 10 children with autism also have some degree of mental retardation, without any extraordinary mental abilities.

2. Autism is caused by Mercury/Thimerosal in Vaccinations. I hate to even bring this up again but this is such a controversial topic that it needs to be listed here. To read more about this see my article from June 2, Autism is not Mercury Poisoning or Left Brain/Right Brain.

3. People with autism have no feelings or emotions. This is like saying a person with autism does not breathe. Autistics are people just like “everyone else”. In fact, they can often be more perspective and intuitive than the average person but have a difficult time expressing themselves. Just because someone is unable to express their feelings does not mean that they are incapable of having emotion. Parents and loved ones of children with ASD must learn to show affection on the child’s terms. Many individuals with ASD get married and have families. They may not be able to express their feelings very well, but they do feel them.

4. Children with autistic spectrum disorders cannot empathize with others; they do not have theory of mind capacities. When working with a relationship-based affect approach tailored to the child’s individual differences, as a child’s language and cognitive abilities improve, so do his theory of mind and his ability to empathize.

5. No one can be cured or recover from autism.
This is an interesting myth because it sparks a little bit of controversy in the autism community. Some people with autism are insulted by terms such as “normal” or “cure”. For understandable reasons, they do not like the suggestion that they are “abnormal” and need to be “fixed”. I think that it is better to say that they can “overcome” symptoms enough to be able to reach their potential and be successful in society.

This just touches on some of the questions I have had to answer recently but I do hope that it will give some of you, my readers, some insight. With numbers now reaching 1 in 150 children all people need to be educated.

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Dr. Helen Egger, a child psychiatrist and assistant professor of psychiatry at Duke University Medical Center, presented findings at a meeting of the Society for Research in Child Development in Atlanta. She notes that it is not parental neglect that causes autistic symptoms in young children but the “extreme situation” of a child left for hours without any human contact.

The article, Brain Studies Yield Autism, a Ped Med installment on Autism, (more…)

Although there is no cure for organic Autism there is a cure for Institutional Autism, an acquired post-institutionalized syndrome. My son, AJ, has Institutional Autism, Sensory Integration Dysfunction, possible Fetal Alcohol Syndrome, multiple chemical and food allergies and intolerances, developmental and speech and language delays, and Post Traumatic Stress and Anxiety. He is only 4 years old.

AJ was adopted from Arkhangelsk, Russia in July, 2005 at 26 months old. Although he was completely nonverbal in Russian he tried hard to understand our English and his very first words were “wow” and “all done” in response to the tasty Chicken McNuggets we purchased for him in Moscow.

After returning to our home in the US we started to notice AJ’s autistic-like symptoms. We had not noticed before because everything on our trip to Russia was hectic and a blur. We began to contact local specialists and do our own research on autism. We even sought out Dr. Ronald S. Federici, one of the most innovative neuropsychologists in the adoption field. He gave us an informal diagnoses of Institutional Autism.

Federici states in his article Institutional Autism (an excerpt from Dr. Federici’s book, Help For The Hopeless Child: A Guide For Families) that the child from the post-institutionalized setting does not fall into any of the classic definitions of classical autism, Rhetts disorder or even childhood disintegrative disorder, although there is certainly a “disintegration” once a child has remained in an institutional setting.”

The traditional Symptom Checklist (or Red Flag List):

Speech and language absence or delays. Inappropriate laughing and giggling. Echolalia (repeating words or phrases in place of normal language).
Abnormal responses to one or a combination of senses; such as sight, hearing, touch, balance, smell, taste, reaction to pain.
Abnormal ways of relating to people,
objects and events. (Inappropriate attachment to objects; don’t seek cuddling )
Spins objects.
Sustained odd play.
Uneven gross/ fine motor skills.
Not responsive to verbal cues and acts as deaf.
Little or no eye contact.
Insistence on sameness; resist changes in routine.
Noticeable physical over activity or extreme under activity.
Tantrums; displays extreme distress for no apparent reason

Unfortunately, AJ had all of those signs. We have had him evaluated for Autism by numerous professionals and because he has social skills and is clearly attached and responsive to us he is not and will probably never be labeled as organically Autistic. However, the only times that he has been evaluated are when he has been on a gluten/casein free diet (an Autism Spectrum Diet said to improve symptoms) so his testing may have been skewed.

How did AJ get this way?

Federici also states that “It has been well documented that many of these children have been found to be tied to their cribs or isolated and sheltered from human contact. Combined with profound medical, nutritional and often physical neglect and abuse, these children regress to very primitive states to where any and all type of sensory-motor, speech and language, and even intellectual abilities have become stagnated and, over the course of time, typically regress and deteriorate to levels where they appear truly mentally deficient when this was not the starting pattern in their lives. ”

We believe that AJ was swaddled in a crib for much of his young life. He was hospitalized for his first 3 months and then moved to his orphanage wherein it was found he was allergic to milk. They switched him to soy formula but never took milk products out of his diet. They also never discovered his banana and oat allergies (which led to numerous bronchial infections). Poor guy never felt well. So, over the “course of time”, AJ never developed his sensory-motor skills, speech and language, social skills, etc. He learned to stimulated himself to pass the time and entertained himself by staring at lights and listening to background noises (thus his fascination with lights and hypersensitive hearing).

I often stop to think about what life would be like for him if he were still there…would he have regressed even further? Would he have learned to speak? Would he have ever developed his zany sense of humor? I don’t think he would have and it frightens me.

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