Tag: autism

Autistic Adults

A common argument for those who believe in a true autism epidemic that is associated with vaccines is that there are no autistic adults.

“Where are all the adults with classic autism? Where are the hand flapping, head banging, self-abusive, spinning, screaming, rocking, stimming, non-verbal and violent 40, 50, 60, 70, 80 and 90 year olds wearing autism helmets and diapers? Where are the grown-ups at the mall experiencing violent tantrums, seizures and GI tract problems?”

Robert F Kennedy, Jr on Is the Autism Epidemic Real?

Of course, the argument is easy is disprove.

Kennedy on Classic Autism

The worst part of Kennedy’s statement is how he chooses to define “classic autism.”

“Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time.”

Finn Gardiner on The Problems with Functioning Labels

Considering that he has also used the term holocaust when talking about autism, it’s not a surprise though.

“We all deserve to be respected for who we are.”

Amy Sequenzia on It is About Respect

But we shouldn’t let folks like Robert F Kennedy, Jr define what autism is for everyone.

Autistic Adults

What’s the first clue that there are autistic adults?

Yes, that’s right, it is all of the autistic adults!

Did you know that the Autistic Children’s Aid Society of North London formed in 1962? It later became the The National Autistic Society.

And the first meeting of the National Society of Autistic Children was held in 1965. It became the Autism Society of America.

Around this time, the Sybil Elgar School (1965) was established as the first school for autistic children and Somerset Court (1972) was established as the first residential community for autistic adults.

Think about Kennedy’s claim. Are we to believe that we have no autistic adults now, but in 1972, there was a need for a residential community for autistic adults?

Also consider that the children diagnosed with autism by DSM-III criteria (1980) are now adults, as that was almost 40 years ago.

Some folks, like Robert F Kennedy, Jr, would likely be surprised that autistic adults published a book to help autistic teens and adults go to college.
Some folks will likely be surprised to know that autistic adults published a book to help autistic teens and adults go to college. They shouldn’t be!

Where are the autistic adults?

They are easily found, if you choose to look for them.

Like everyone else, many of them are:

And sure, some have more issues than others. Some are living at home or in supported living arrangements, too many live in poverty, and tragically, too many die young.

That’s why it is important that we all do more to support autistic children, autistic adults, and their families, instead of continuing to believe these folks who push propaganda about vaccines.

More on Autistic Adults

What Is the Evidence for CBD Oil?

Are you wondering if your kids should be taking CBD oil?

That’s probably not a question you would be thinking of asking just a few years ago, but now that CBD products are everywhere, with hundreds of millions of dollars in sales, and claims that it can treat everything from seizures and anxiety to cancer, you might be thinking you need to jump on this new fad.

What Is CBD Oil?

Many folks are likely skeptical when they hear about all of the benefits of CBD oil.

This is the stuff that is extracted from marijuana plants, right?

How is it even legal to sell CBD oil or gummies infused with CBD?

To understand that, you have to understand that cannabidiol (CBD) oil is the part of the marijuana plant that doesn’t get you high. That comes from tetrahydrocannabinol (THC).

And many of the products you see with CBD oil that is sold over-the-counter aren’t even derived from marijuana, but instead come from hemp plants.

Labeling something as hemp doesn’t necessarily make it legal though. Regulators in Ohio, for example, recently announced that CBD oil derived from hemp is illegal and that the only legal CBD oil will be dispensed in state-licensed dispensaries.

What Is the Evidence for CBD Oil?

There is definitely evidence that CBD oil can have beneficial effects in some medical conditions.

Except for treating some types of resistant seizures, there is no good evidence that CBD oil has all of these other benefits.
Except for treating some types of resistant seizures, there is no good evidence that CBD oil has all of these other benefits.

In fact, the FDA recently approved Epidiolex oral solution for the treatment of seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet syndrome. Epidiolex is an oral solution of oil-based CBD that is extracted from marijuana plants.

What other medical conditions?

While it is not approved to treat any other medical conditions, cannabidiol is being studied to treat people with ADHD, anxiety, autism, schizophrenia, chronic pain, Multiple Sclerosis, Parkinson disease, Tourette syndrome, and substance use disorders.

Should You Try CBD Oil?

What does that mean right now if you have a child with anxiety or another disorder and you are interested in CBD oil?

Although it might be tempting to buy and try the CBD oil that you can find at your local health food store, remember that they aren’t the same thing as Epidiolex, the prescription version of CBD. When you buy an over-the-counter CBD product, you have no idea what dosage of CBD you are really getting.

Anyway, until further testing is done, you have no idea what dose to give your child with anxiety or any other disorder besides seizures anyway.

And like other drugs, CBD oil can have side effects.

So unless you can get in a clinical trial, you should likely wait and continue your current therapies.

But since Epidiolex is approved to treat certain seizures, can’t your doctor simply prescribe it off-label to treat other conditions, like anxiety, if they wanted to? While that does often happen for other medications, it is very unlikely to happen for Epidiolex, even after the rescheduling process is completed and it is no longer a Schedule I substance and can be prescribed in states where it is illegal to prescribe medical marijuana.

It is estimated that Epidiolex will cost over $30,000 a year.

More on the Evidence for CBD Oil

Is There Evidence for That Therapy, or No?

What do you think of when you think of alternative medicine?

“…there’s no such thing as conventional or alternative or complementary or integrative or holistic medicine. There’s only medicine that works and medicine that doesn’t. And the best way to sort it out is by carefully evaluating scientific studies – not by visiting Internet chat rooms, reading magazine articles, or talking to friends.”

Paul Offit, MD on Do You Believe in Magic

Do you think of acupuncture, Ayurveda, homeopathy, Reiki, or reflexology?

And do you wonder if they really work?

Evidence Based Medicine, or No?

Unfortunately, there are many things that parents do for which there is absolutely no evidence that they can actually help their kids.

Some parents are even encouraged to do them by well meaning pediatricians, who may not know the latest evidence about:

  • If her jaundice had been much worse, she would have gotten phototherapy, not sunlight.
    If her jaundice had been much worse, she would have gotten phototherapy, not sunlight. Photo by Vincent Iannelli, MD

    exposing jaundiced babies to sunlight – not only does it not work, unless they were in the sun all day long (this is done in some parts of the world, but under tinted windows to block UV and infrared light), it isn’t very practical and the AAP advises against it

  • changing your child’s toothbrush after they have strep throat – a study has shown it is not necessary
  • alternating Tylenol and Motrin – it isn’t necessary, promotes fever phobia, and can be dangerous if you mix up the times or dosages
  • putting kids on a BRAT diet when they have diarrhea – not necessary and doesn’t help kids get better any faster

For other therapies, your pediatrician isn’t likely to recommend them unless they are a so-called integrative or holistic pediatrician.

“Attaching the word “therapy” to the back end of an activity is an attempt to give it a status it may not deserve – and that status is subsequently used to garner insurance coverage, hospital resources, consumer patronage, and research dollars. It is also used to constrain how we think about an intervention – implying that perhaps there is some specific mechanism as work, when none need exist.”

Steven Novella on Aroma”therapy”

These non-evidence based “therapies” include:

  • acupressure – acupuncture without the needles
  • amber teething necklaces – if your baby’s amber teething necklace doesn’t seem to be doing anything, it isn’t because it’s fake and not made of genuine Baltic amber, it’s because it’s a teething necklace…
  • aromatherapy
  • chiropractic care of newborns and infants – understand that chiropractors don’t adjust real dislocations or misalignments in your spine, but instead manipulate what they think are subluxations that block the flow of energy that prevent your body’s innate ability to heal itself from working. Since these subluxations can’t be seen on xray, it makes you wonder why they chiropractors do so many xrays, doesn’t it?
  • craniosacral therapy (osteopathy) – has to do with tides and rhythms of cerebrospinal fluid, which these practitioners think they can feel and manipulate…
  • dry or wet cupping – what’s next, leeches?
  • essential oils – they don’t even smell good a lot of the times…
  • gripe water for colic
  • Oscillococcinum will not prevent flu complications.
    Oscillococcinum will not prevent flu complications.

    homeopathic “medicines” for teething, colic, gas, and the flu, etc. – do you know what’s in Oscillococcinum, the homeopathic flu medicine? It’s a mix of the pancreatic juice, liver, and heart of a duck, although it is diluted so many times, it is only the memory of those substances that remain in the little pills you take. How does that help treat your flu symptoms?

  • hyperbaric oxygen therapy – this can actually help treat folks with carbon monoxide poisoning and decompression sickness (divers), but HBOT isn’t going to help your autistic child
  • hypnosis and hypnotherapy for pain, anxiety, and insomnia – hypnosis might work as a distraction technique, but there is no good evidence beyond that
  • magic socks – please don’t make your kids wear ice-cold socks at night, either with or without first covering them with Vicks VapoRub. It’s as helpful as putting a raw, cut onion in their socks, which your shouldn’t do either…
  • magnetic field therapy – do your kids still wear one of those magnetic bracelets to “help” their balance?
  • mindfulness – while a nice idea and it may help you relax, it doesn’t have all of the health benefits that folks claim
  • restrictive and fad diets – from gluten-free diets for kids who don’t have Celiac disease to the GAPS and Gluten Free-Casein Free (GFCF) Diet, these diets don’t help, can be difficult and expensive to follow, and can be dangerous if kids don’t get all of the nutrients they need

Have you tried any of these therapies on your kids?

If you have, do you understand that they “work” by way of meridians (acupuncture), the memory of water, like cures like, and law of the minimum dose (homeopathy), energy and spinal fluid tides (craniosacral therapy), manipulating energy fields in your hands or feet (reflexology), and spiritual energy (Reiki)?

What’s the Harm of Trying Alternative Treatments?

But even if you don’t go to a holistic pediatrician that recommends any of these therapies that don’t work, does your pediatrician discourage you from trying them?

If they do, how strongly?

Do they say it isn’t going to work, so don’t do it, or do they use more permissive phrasing?

The American Academy of Pediatrics, for example, tells parents that amber teething necklaces don’t work and pose a risk for strangulation and choking, but then gives advice for “parents who choose to use these necklaces.”

Since they don’t work, why not just tell them to save their money and not use them?

Do you ever wonder, what’s the harm in using these things that don’t work?

“Rather than getting distracted by alluring rituals and elaborate pseudoscientific explanations for how they work, we should focus on maximizing the non-specific elements of the therapeutic interaction, and adding that to physiological or psychological interventions that have specific efficacy.”

Steven Novella on EMDR and Acupuncture – Selling Non-specific Effects

If your pediatrician knows that homeopathic medicines aren’t going to work, but tells you to try them if you want, what are they going to let you try next – black salve, coffee enemas, colloidal silver, dry needling, earthing, faith healing, iridology, psychic surgery, slapping, tapping, or shamanism?

In addition to kids actually being harmed by many of these alternative therapies and by missing out on real medicine that could have helped them, putting so much focus on these non-evidence based “treatments” is a waste of time and money that could go towards really helping people.

And be many of the folks who pursue and push these types of alternative treatments also push myths and propaganda about vaccines or seek to skip or delay their child’s vaccines, choosing to follow a follow a non-standard, parent-selected, delayed protection vaccine schedule that leaves their kids at risk for vaccine-preventable diseases.

Don’t be fooled.

Learn to be skeptical, stick to the evidence, and stick with medicine that works.

What to Know About Evidence Based Medicine

There is plenty of evidence that alternative therapies don’t work and can do harm. Stick with medicine that works to keep your kids safe and healthy.

More on Evidence Based Medicine

New Report on Autism Rates

A new report on autism prevalence rates isn’t generating many headlines.

Why?

“There was not a statistically significant change in the prevalence of children ever diagnosed with autism spectrum disorder from 2014 to 2016.”

Zablotsky et al on Estimated Prevalence of Children With Diagnosed Developmental Disabilities in the United States, 2014–2016

While the rate seemed to increase on paper, from 2.24 to 2.76%, it was not a statistically significant change. If it had been a statistically significant change, then you could think autism rates really were increasing and the report would have made headlines beyond anti-vaccine websites.

“By trying to say that there is no significant increase, is the government hoping to reassure people that autism isn’t a significant problem? That the rising number of children with autism isn’t something that anyone has to worry about? Are they trying to avoid a panic?”

Dr. Bob Sears

As most people likely understand, the term significant is used in the report as a statistical term.

When something is found to be statistically significant, then you can be fairly confident that it wasn’t caused by chance alone.

“Significance is a statistical term that tells how sure you are that a difference or relationship exists.”

What does “statistical significance” really mean?

So by stating that “there was not a statistically significant change in the prevalence of children ever diagnosed with autism spectrum disorder,” they were not “trying to avoid a panic.” There is no conspiracy.

Unlike Dr. Bob and some others, they were simply trying to not mislead people into thinking that the change from 2.24 to 2.76% meant something that it did not.

Reports About Autism Rates

Another thing to keep in mind as you think about this report – there are multiple reports about autism prevalence rates that come out every few years.

The latest report uses National Health Interview Survey data that was collected by the National Center for Health Statistics.

Unlike the autism prevalence reports from the Autism and Developmental Disabilities Monitoring (ADDM) Network that we are used to, which reported a rate of 1 in 68 children in 2016, the NCHS reports:

  • National Health Interview Survey question about autism.
    The National Health Interview Survey question about autism.

    rely on parent reports during a telephone survey – one of the questions that they are asked is if a health professional has ever told them that their child has autism, but that diagnosis is not confirmed by looking at medical or school records

  • are prone to recall bias – parents might not accurately recall what doctors have told them in the past about their child
  • have questions that have changed over the years, for example, when PDD was added in 2014, it was thought that it might have confused some parents who didn’t know that a pervasive developmental disorder is different than a developmental disorder
  • look at lifetime prevalence

And not surprisingly, over the years, the NHIS has typically reported higher autism rates than the Autism and Developmental Disabilities Monitoring Network.

autism-rates
The NCHS autism prevalence rate reports have traditionally been higher than others.

So what does this new report on autism prevalence mean?

It means the same thing that all of the other recent reports have been saying, that autism prevalence rates seem to be unchanged.

What to Know About Autism Rates

After increasing for several years, autism rates seem to be unchanged, but that hasn’t kept anti-vaccine folks from trying to get parents to panic about changes in prevalence rates that are not statistically significant.

More on Autism Rates

The Myth of an Autism Epidemic

We hear stories about the rise in autism and the autism epidemic all of the time.

Autism prevalence rates have been steady at 1 in 68 since 2010.
Autism prevalence rates have been steady at 1 in 68 since 2010.

Every few years, the CDC had been releasing a new report which showed a higher prevalence of autism in the United States, including:

  • 1 in 150 children in 2000
  • 1 in 150 children in 2002
  • 1 in 125 children in 2004
  • 1 in 110 children in 2006
  • 1 in 88 children in 2008
  • 1 in 68 children in 2010
  • 1 in 68 children in 2012

Looking at those numbers, it is easy to see most people think that the rate of autism is rising.

And if the rate of autism is rising, then there must be a cause.

Thinking about it like that, it becomes easy to see why vaccines became the scapegoat for causing autism, especially after Andrew Wakefield told everyone that it “is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR…”

The Myth of an Autism Epidemic

Many experts don’t think that there is an autism epidemic though.

“…the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them.”

Emily Willingham

There are several different explanations for the apparent rise in the number of children being diagnosed with autism, including:

  • better recognition among health care providers
  • better recognition among parents
  • diagnostic substitution – children were once diagnosed with other conditions, such as mental retardation and learning disabilities
  • broadening of the criteria used to diagnose autism, including changes in DSM criteria, which went from labeling children with autism as having childhood schizophrenia (1952) and including just three essential features of infantile autism (1980) to adding PDD-NOS (1987) and more subtypes and symptoms to the autism diagnosis category in DSM-IV (1994).
  • social influences, including that more parents may have wanted to seek help when more resources become available and because they may have become more accepting of the possibility that their child had autism, leading them to seek a diagnosis and services. For example, before 1975 and the Education for All Handicapped Children Act, children with disabilities were excluded from school. And then in 1990, the Individuals with Disabilities Education Act (IDEA) included autism as a separate disability, making it a little easier to get services.

All together, these explanations help explain what has been confirmed by numerous studies, that the true prevalence of autism hasn’t changed over time.

What To Know About The Autism Epidemic Myth

There is no autism epidemic.

  • There are adults and older people with autism. Did you know that the the first meeting of the National Society of Autistic Children was held in 1965?
  • The idea that the ‘autism epidemic’ is a myth is not new – experts have been talking about it for over 10 years, which makes you wonder why some people still push the idea. An idea that hurts autistic families.
  • A 2015 study concluded that “Changes in reporting practices can account for most (60%) of the increase in the observed prevalence of ASDs in children born from 1980 through 1991 in Denmark. Hence, the study supports the argument that the apparent increase in ASDs in recent years is in large part attributable to changes in reporting practices.”
  • Autism is thought to be genetically based.

Some folks, especially those in the anti-vaccine movement, don’t want to believe that there is no autism epidemic though.

“If there is no autism epidemic, if there is a “stable incidence” of autism over recent decades, then this alone is powerful evidence against the vaccine hypothesis – and in fact removes the primary piece of evidence for a vaccine-autism connection.”

Steven Novella on The Increase in Autism Diagnoses: Two Hypotheses

After all, if there is no autism epidemic, then they can’t blame vaccines for be causing an autism epidemic…

More About the Autism Epidemic Myth

 

Autism Acceptance vs Autism Awareness

Apple has added an autism acceptance page to their app store.
Apple has added an Autism Acceptance page to their app store.

April is traditionally recognized as Autism Awareness Month and April 2 as World or International Autism Awareness Day.

These awareness campaigns are supported and driven by Autism Speaks and their “light it up blue” drives.

Many people will likely be surprised that there isn’t universal support for the “light it up blue” campaign of Autism Speaks to “shine a light on autism” on World Autism Awareness Day. Instead, in addition to the many people who think that April should be more about Autism Acceptance and less about autism awareness, there are many people who think that “Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities” because they don’t listen to #AcuallyAutistic people and historically:

  • have not included an autistic person among their senior leadership
  • have advocated anti-vaccine ideas
  • use a very small amount of their budget to directly help autistic people pay for the services and supports that they need

Instead of Autism Speaks, the Thinking Person’s Guide to Autism suggests that people look for an autism group that focuses on support (not a cure), evidence based interventions, inclusiveness, and advocacy for the human and civil rights of all autistic people. And that the focus move to acceptance.

Similarly, Steve Silberman, the author of Neurotribes, explains why autism awareness is not enough.

Autism Advocacy Groups

As everyone becomes more aware of autism, they are also becoming more aware of the differences in all of the autism organizations out there. And that some provide bad autism information.

Consider the Chili’s public relations blunder, in which they were planning to donate 10% of sales on April 7, 2014 to the National Autism Association, an anti-vaccine autism organization. That situation highlighted how important it is to know the organization you are supporting and or visiting information and advice.

The organization in question, in addition to promoting unproven autism treatments, like chelation, clearly states that they believe that “vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.” They also state that “research to investigate, and reduce, adverse events in immunized individuals is currently nonexistent.”

The National Autism Association is the same organization that used anti-vaccine talking points to attack Dr. Paul Offit and his appearance on Dateline in an appearance with Matt Lauer that was critical of Andrew Wakefield. And it is the same organization that has tried to defend Andrew Wakefield’s fraud.

While many other autism organizations have distanced themselves from the idea that vaccines cause autism, this group is pressing on with the idea.

Why is that a problem? Keeping the focus on vaccines, after so many studies have shown that there is no link between vaccines and autism, diverts resources away from services and support for children and autistic adults.

Especially with the rise in vaccine-preventable diseases, including large measles outbreaks, it is very disappointing that Chili’s chose this organization to support.

Do you know how to find a reputable autism group that provides good autism information.

Reputable Autism Groups and Organizations

Among the most reputable autism groups and organization are the:

  • Autistic Self-Advocacy Network (ASAN) – Our projects seek to improve public understanding of autism, to involve the Autistic community in research that is relevant to the community’s needs, to empower Autistic people to take leading roles in advocacy, and to promote inclusion and self-determination.
  • Autism Society of America – Founded in 1965, the Autism Society helps over a million people each year through a grassroots nationwide network of local and state affiliates.
  • Autism Women’s Network (AWN) – a supportive community for Autistic women of all ages, our families, friends and allies.
  • National Autistic Society –  the leading UK charity for autistic people (including those with Asperger syndrome) and their families.
  • The Global and Regional Asperger Syndrome Partnership (GRASP) – works to improve and enrich the lives of adolescents and adults on the autism spectrum, and their families through, community advocacy & outreach, education, peer supports, programming and services.
  • The Arc and autism NOW – provides high quality resources and information in core areas across the lifespan to individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, caregivers, and professional in the field.
  • Autism Science Foundation – supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research.
  • Autistica – funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions
  • NOS Magazine – a news and commentary source for thought and analysis about neurodiversity culture and representation.
  • Golden Hat Foundation – changing the way people on the autism spectrum are perceived, by shining a light on their abilities and emphasizing their great potential.
  • Simons Foundation Autism Research Foundation (SFARI) – sponsors research that promises to increase our scientific understanding of autism spectrum disorders, thereby benefiting individuals and families challenged by these disorders
  • Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) – brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autism spectrum.

Are you still going to “light it up blue?”

How about checking out these other autism groups instead and learn more about autism acceptance. You might also be interested in these blogs by autistic people.