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Living with Autism


March 29, 2014

Autism Rates Don't Make Sense

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 Centers for Disease Control and Prevention (CDC) has "estimated 1 in 68 US children has an autism spectrum disorder (ASD)."


The "number of U.S. children with autism has surged," according to CDC. 


Read CDC's recently released report: "Prevalence of Autism Spectrum disorder Among Children 8 years old--Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010."

Yes, you read correctly. The report is based on 8-year old children in a few different states. This is not quality research. This is lazy, low-level thinking research. 

More like a drive-by glance at a group of people standing on the corner of a street in a large metropolis, then basing everything you saw on that one group. 

Interestingly, CDC, to their credit, did not state in their "press release" that autism rates are: 1 in 68 US children, but rather the mainstream press stated it's 1 in 68 US Children. 

CDC clearly stated, "1 in 68 children in multiple communities in the United States has been identified with autism spectrum disorder." 

Specifically, if you actually read the report, it's 11 states sampled. So, it's NOT literally 1 in 68 children in the USA. 

Furthermore, CDC's press release says that the 2010 autism study recently released, is based on... 

..."information collected from the health and special education records of children who were 8-years old and lived in Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, New Jersey, Missouri, North Carolina, Utah and Wisconsin." What about the other states? 

Still more, CDC admits they were "not able to verify the birth certificates" of some of the children who were included in this "surveillance system" type research. 

"Surveillance" meaning researchers read a few children's special education and health records. A review of records. There was no observational studying going on. No questions. No investigation. 

CDC also admits, "Some educational and health records were MISSING for certain children, including records that could not be LOCATED for review." Well, shit. That's always helpful in conducting a quality investigation that you share with the non-fact-checking press. Missing information. Spectacular.  

CDC further stated that they chose some children to review, based off an autism diagnosis as per a generic "billing code" used at some healthcare sites, though the code wasn't specifically for autism. WASN'T...for autism. So we don't really know if these kids surveyed were even autistic. 

Equally delightfully helpful in gaining a better understanding of autism rates in the USA. Thank you for your diligent human effort to help us all understand alleged  skyrocketing rates of autism. 

 (See CDC website, "10 Things to Know About New Autism Data)

If you care to read it, read the actual report on the CDC site. 

It says researchers looked at 5,300 EIGHT-year old children's health records, across 11 states of the U.S.A. One age group. A small number. In 11 states. 

Not one 8 year old was directly observed. Not one parent was interviewed. All the CDC research did was review health and special education reports of 5,300, 8-year old children, in 11 different states.

Flashback to 2012, CDC released a similar autism study that created media buzz and panic, claiming that 1 in 88 children in the U.S. were autistic. 

Yep, back in 2012, CDC actually said "in the U.S." on their website, much to the chagrin of some researchers who knew this was not an accurate statement, since the CDC didn't do a true epidemiological study. 

One neuroscience researcher even called into question the study,

"It's not a representative sampling of the United States. If you don't use a representative population, then your findings don't generalize to the whole population," said Mike Milham, a neuroscience researcher at the Child Mind Institute in New York. 

So don't panic. Autism rates aren't on the rise. 

What IS on the rise is an epidemic of children who aren't truly autistic being slapped with the autism diagnosis, or squeaking into autism programs with another diagnosis, so they can get services. 

Not that these children don't need services, but if they aren't autistic, they should be getting services in programs designed for their actual needs. Autism is not a bandwagon you jump on. It's a serious medical diagnosis that leaves families in constant chaos trying to get services. The last thing we need is for people who aren't autistic getting services intended for people with autism. 

 Here's something that may shock you: 

According to a July, 2011 news report, 

"Some parents and doctors are colluding to deliberately misdiagnose school children as autistic so they can get help for other problems, a medical professional claims."  

Clinical psychologist and manager of diagnostic assessment services at Autism Spectrum Australia, Vicki Gibbs, said there were various reasons for the surge in the number of children diagnosed with autism. 'The most obvious is that people are more aware of it than before and people are also more aware of the more subtle forms of autism. Another reason is autism now attracts more funding, especially in the early intervention yearsMs Gibbs said there was a small group of people happy to have their children diagnosed with autism because giving them a label was the only way they could get help." Great, so they got an autism label to get services, not because their child is really autistic. Awesome. 

I find it hard to believe doctors would "collude" to deliberately misdiagnose a child with autism. Perhaps some doctors don't understand what true autism is, so they misdiagnose the child after a pushy parent pushes a diagnosis to get services. 

Whatever the reason, there is never an excuse to label someone autistic when they aren't really autistic, so the person can "get services."

"Many children with related health issues--ADD, ADHD and speech or developmental delays---are getting autism diagnoses early on and then losing them as they mature..."  In essence, they were NEVER autistic to begin with.



March 14, 2014

Behavioral Problems in Autism Linked to Medical Issues

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryOne of the most challenging autism cases a behavioral or mental health therapist can encounter is a case involving severe self-injurious behavior (SIB) in autism. Because there are different levels and types of SIB, I will write only about head banging in this post. (My autistic son doesn't head bang, but the questions I've devised at end are the same questions I would ask for autistic people who punch or slap themselves in the head area). 

Head banging is different than body, face or head hitting. But it is just as heartbreaking. It demands kind, compassionate and effective analysis, treatment and intervention. 

Head banging in autistic individuals often involves, but is not limited to, slamming the whole head, or parts of the head, into walls, windows, car doors, cement sidewalks, tile floors, carpeted floors, trees, fences, chairs, refrigerators, tables, elevators, dirt trails, sides of swimming pools, shopping carts, swing sets and/or bedposts. Headbanging in autism can begin from one year old. It's a very serious behavior. Left untreated, the autistic person will suffer years of injury, pain and suffering. I've heard some painful stories. 

Years ago, at an autism support group meeting, I met a 59 year old woman whose severely-autistic daughter was a "head banger". The severely-autistic adult "child" (still learning to use the bathroom) was living with her aging mother and father because she had been "evicted" from every group home from San Bernadino to San Diego County. During her latest return back home, the autistic woman suddenly crashed her head through the family car's front window. Apparently, a car in the next lane had backfired and burned out, triggering the behavioral outburst. Can you imagine the stress on this mother?

Over time, the mother dreamed of killing herself and dropping her daughter off at a convent. She prayed for a miracle. 

At some point, a court appointed counselor/therapist arrived. The mother could not bare another disappointed. "Come in," was all she could whisper. 

The therapist, an unmarried, Welsh-born, childless woman in her early twenties. Surely, she lacked experience. What would she know? recalled the woman. Well, it turned out she knew plenty. The therapist had grown up on a farm, with a big family and with a severely-autistic sibling who had severe self-injurious behaviors. The main behavior: headbanging. It wasn't an overnight success, and there were others who aided in the behavioral changes, but the point is, the autistic woman's behavior improved. (She was not cured of autism. She still apparently had some mild self-abusive behaviors, but the headbanging stopped). 

What was eventually discovered to be the underlying, fueling etiology to this horrendous headbanging?

Apparently, a previous unknown Ethmoid bone (nasal) fracture had left fragments embedded into the autistic woman's cribriform plate (part of FRONTAL BONE and roof of nasal cavity) leading to all sorts of problems nobody tied to the onset of her headbanging. 

One can only imagine the chronic pain this autistic woman had been suffering to the point she began to smash her forehead into things. Her old injury was treated, however the post-op recovery was apparently a two week understandable nightmare, that became so bad, the autistic woman had to be put in restraints and medicated, to prevent her from clawing at her nose. 

Clearly, some behavioral problems in autism are linked to hidden medical issues, as this is only one of many stories I've heard and read, illuminating medical issues contributing to behavioral problems in autism. No doubt, it takes a team effort. For sure, doctors who treat self-injurious autistic patients should rule out anything medical that could be the cause of acute or chronic health dangerous behaviors. And behavioral therapists can ask more questions that need to be asked when a NON-VERBAL autistic person exhibits acute or chronic serious self-injurious behavior. Some helpful questions are:

At what age did the headbanging first present itself? ______

Have doctors ordered functional or structural imaging (fMRI, MRI, CT scan) of head to rule out underlying medical issues that may be fueling the headbanging? If yes, list which ones and results, if known____________________

WHAT part of the head is targeted? 
1. Right             Yes___    No____
2. Left               Yes___    No____
3. Front              Yes___   No_____
4. Back               Yes____  No_____

WHEN is the headbanging happening?

For example:  (answer Yes or No)

Upon awakening?                      
During, before or after eating?   
During, before or after drinking? 
During, before or after bath or shower?           
Before or after bedtime?                              
While walking?                          
While running?                           
While sitting?
While playing?                           
In vehicles?
While vehicle is stopped?
While vehicle is moving?
Before, during or after 
After or while hearing loud noises?
At specific times of day?
At random times throughout day?

HOW do you stop the headbanging? Be specific. 

What works to stop the headbanging? Please explain. 

Does the person engage in headbanging when nobody is around? 

Does the person engage in headbanging only in the presence of others?

Remember, parents of these severely-autistic children and adults are counting on you to help. Ask the critical questions that will illuminate everything and anything that could be contributing to the self-injurious behavior. 

Kim Oakley


March 11, 2014

Calming Autistic Brain with Bacopa?

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Might Bacopa Monnieri Help Autistic Persons Who Suffer from Epilepsy?
According to a 2012 Journal of Biomedical Science report, the answer is yes.
Further research by the Israel Ministry of Science shows by inhibiting excitable neurons, you can stabilize neighboring neurons that would otherwise become part of neuronal excitability often seen in some autistic brains. 
Bacopa Monnieri, an herb native to Australia and India, can reduce neuronal excitability.
Many conventional pharmaceutical drugs for autism do more harm than good. Many drugs used to treat aberrant behaviors in autism are now involved in lawsuits. 

What is Bacopa? Bacopa Monnieri targets GABAa and GABAb receptors.
GABA dysfunction is implicated in autism and epilepsy.
GABA is a principal inhibitory neurotransmitter in the cerebral cortex, which mitigates neuronal excitation.
If neurons are constantly excited, it’s difficult to concentrate and learn. If you can’t learn, you become agitated. This could increase aberrant behaviors commonly seen in autism.
Bacopa Monnieri helps facilitate the acquisition, consolidation and retention of learned tasks. This can help people with autism and epilepsy who have difficulty processing new information. 
An agent that enhances inhibitory neurons may prevent the brain from spinning out of control into a hyper-excited state. Some children and adults with autism have hyper-excited neuronal dysfunction. That doesn't mean they aren't intelligent, it just makes it harder for them to concentrate when the brain is so active. 

Calming the brain with Bacopa Monnieri seems a more logical and reasonable alternative to benzos, antihistamines or dangerous antipsychotics. 

Rejuvenation Res. 2013 Aug; 16(4):313-26.

Bacopa monniera (L.) Wettst ameliorates behavioral alterations and oxidative markers in sodium valproate induced autism in rats.