ADHD May Mask Autism in Young Children

A study published online Sept. 14 and which will be published in the October journal Pediatrics showed that symptoms that were attributed to Attention Deficit Hyperactivity Disorder (ADHD) may conceal autism spectrum disorder in very young children. It took on average 3 years longer for children initially thought to have just ADHD to get an autism diagnosis.

According to Dr. Amir Miodovnik, a developmental pediatrician at Boston Children’s Hospital , “three years is a significant amount of time for the kids to not be receiving therapy.”1 For the study, the researchers looked at data on nearly 1500 children with autism that were part of the 2011-2012 National Survey of Children’s Health. The survey asked parents whether their children were diagnosed with ADHD or autism and at what age the children were at diagnosis. Approximately 43% of the kids had the dual diagnosis.

The study found that more than 40% of the children diagnosed with ADHD and autism had the ADHD diagnosed first. A majority—81%–of the kids initially diagnosed with ADHD were diagnosed with autism after age 6. Children diagnosed with ADHD first were 17 times more likely to be diagnosed with autism after age 6 than those children diagnosed with only autism. The children first diagnosed with ADHD also were 30 times more likely to receive an autism diagnosis after age 6 than children who were diagnosed with ADHD and autism at the same time or initially diagnosed with autism and received an ADHD diagnosis later.

Dr. Miodovnik concludes that “parents who believe a child younger than 5 has ADHD should take their child to a developmental pediatrician, rather than a family physician, to make sure that possible autism will not be overlooked. “ He further stated that if a parent “suspects ADHD in very young children, it’s probably best for them to be evaluated by a specialist, partly to not miss a diagnosis of autism, and also because managing a child with ADHD can be complicated.”1

Such is the case (only with worse delays) in my own family. I did not get an autism diagnosis until age 40 and I got an ADHD diagnosis a few years earlier. My daughter got an ADHD diagnosis at age 6—though the symptoms were apparent a year or two earlier. The autism was diagnosed at age 7 ½ and only because the new psychiatrist I brought her to for ADHD meds recognized the autism in both of us.

Source: 1

Chemical from Broccoli Sprouts Improved Behavior in Autistic Males

A study published in the October 2014 journal Proceedings of the National Academy of Sciences, indicated promise in easing social interaction and verbal problems as well as decreasing ritualistic, repetitive behaviors in moderate to severe autistic males who took a daily dose of sulforaphane. Sulforaphane is derived from broccoli sprouts.

The study was a joint effort between scientists at Mass General Hospital for Children and the Johns Hopkins University School of Medicine. Forty autistic males between the ages of 13 and 27 took part in the study. Before the start of the trial, the autism patients’ caregivers and physicians filled out three behavior assessments: The Aberrant Behavior Checklist (ABC), the Social Responsiveness Scale (SRS) and the Clinical Global Impressions-Improvement Scale (CGI-I). The assessments measure “sensory sensitivities, ability to relate to others, verbal communication skills, social interactions, and other behaviors related to autism.”

Twenty-six of the autism participants were randomly selected to receive 9 to 27 milligrams (based on participant weight) of sulforaphane daily and 14 participants received a placebo. Behavioral assessments were completed at 4, 10 and 18 weeks while the study participants continued to take the sulforaphane or the placebo. A final assessment was completed 4 weeks after the treatment ended.

After 18 weeks of treatment, the average score of those who received sulforaphane decreased 34% on the ABC and 17% on the SRS. According to the CGI-I scale, 46% of the sulforaphane recipients experienced noticeable improvements in social interaction, 54% improved in aberrant behaviors and 42% improved in verbal communication. The scores of the participants trended back to the original scores after stopping the sulforaphane.

One of the professors in the study, Paul Talalay, M.D., a professor of pharmacology and molecular sciences, and his research group have been researching sulforaphane for over 20 years. He cautions that sulforaphane precursors in “different varieties of broccoli are highly variable” and that the “capacity of individuals to convert these precursors to active sulforaphane also varies greatly.” He notes that it would be “very difficult to achieve the levels of sulforaphane used in the study by eating large amounts of broccoli or other cruciferous vegetables.”

The sulforaphane-rich broccoli sprouts extract has not been made into a commercial product; therefore, it is not readily available to those with autism. However, “broccoli sprouts and seeds rich in glucosinolates have been licensed by Johns Hopkins to Brassica Protection Products, LLC.” Antony Talalay, son of Dr. Talalay is CEO of the company.


What Can be Learned about Brain Cancer from Autism

On February 9, 2015, a physiology professor, Rajini Rao, Ph.D, at Johns Hopkins University School of Medicine announced his research group’s findings through the journal Nature Communications regarding the problems with a protein involved in cargo transport within the cells of people with certain forms of autism and people with a deadly form of brain cancer. The research involved a protein called NHE9 which is on the surface of endosomes (“cargo carriers”) that regulate the delivery of and removal of important proteins from cells. The research suggests that drugs developed to target NHE9 could help fight the most common and deadly form of brain cancer, glioblastoma.

Dr. Rao’s team first studied cargo transport inside the cells of patients with autism. The endosomes’ function is to carry new proteins to certain areas throughout the cell and remove old proteins for destruction. The research found that “autism-associated defects in the protein NHE9 cause this protein to clog the leaks leaving the endosomes too acidic and making them race to remove cargo from the cell membrane” thus destroying the protein too soon. The acidity level inside the endosomes is key to the speed of the transport of proteins in and leaks out.

Next in the research regarding NHE9, the team researched through patient databases and found that elevated levels of NHE9 are associated with “resistance to radiation, chemotherapy and poorer prognosis for patients with glioblastoma.” Dr. Rao then teamed up with a neurosurgeon at Johns Hopkins, Alfredo Quinones-Hinojosa, M.D., to examine NHE9 in the tumor cells from several patients. Research found that the cells with the most NHE9 travelled fastest when placed on a “surface mimicking the brain” suggesting high odds of metastasis. This theory was confirmed when cells manipulated to have low or high levels of NHE9 were transplanted into the brains of mice.

Further studies revealed that in contrast to autism, NHE9 is overactive in brain cancer. The result is the endosomes leak too much and the endosome becomes too alkaline which causes “cancer-promoting cargo” to stay on the cell surface too long. Dr. Quinones-Hinojosa stated that the research results give researchers a better idea of what to target to make glioblastoma “less aggressive and devastating.”


Autism and Rudeness

As one on the autism spectrum for over 50 years, I have gotten into trouble for being “rude” my whole life. Rudeness is a social construct. “Social construct” is defined as “an idea or notion that appears to be natural and obvious to people who accept it but may not represent reality, so it remains largely an invention or artifice of a given society1.” If you are not born with social instincts, as is the case with people on the autism spectrum, what is “obvious” when it comes to rudeness, is not obvious to one with autism.

As one born in the early 1960’s, no one at that time in the US had the remotest clue what anyone on the autism spectrum–except maybe the severely autistic–was actually like. Nobody had a clue what to make of me. Don’t get me wrong, I was raised to be “polite” as in “please,” “thank you” and all that, but that does not mean I had a concept of what a “rude” statement was. I remember when as a child and adolescent, teachers and mothers of my “friends,” would get mad at me for, what to me, was no apparent reason. They assumed I knew what “rude” behavior was and I was behaving badly deliberately. Problem was, I was completely mystified.

As I got older, I started to figure out what “rude” was; but still to this day, I can’t escape from being called “tactless.” Another word for tactless is unsubtle. Yep, autistic people are unsubtle. What you see is what you get and we tell it like it is. That’s not necessarily a bad thing. Plus, we have enough anxiety without having to walk around on eggshells hoping not to offend people. You say what you mean, while still trying to be nice, and that’s the best you can do.

If I would give one piece of advice to people who do not have autism about the concept of rudeness, it would be to understand that being “rude” is not such a horrible thing and not all rudeness is deliberately rude behavior. Take into account whether the person is just socially clumsy when you decide how to respond to someone you deem as rude. Additionally, remember that not everyone can finesse diplomacy, thoughtfulness, sensitivity etc. and you should think twice before you get all offended about what people say or do—whether they are on the autism spectrum or not.

Source: 1

UPDATED:  January 27, 2018


New genetic variant that causes autism

Johns Hopkins University School of Medicine reported in the Journal Nature in March of this year about a study by a professor at the school, Aravinda Chakravarti, regarding an autism gene research breakthrough he and his team found. Their research focused on the gene CTNND2. Chakravarti et al compared the gene sequences of 13 families who had more than one female with autism spectrum disorder to the gene sequences of people from a “public database.”

The researchers found four potential genes that could be implicated in autism but they focused on the CTNND2 gene because it was found in a region of the genome “known to be associated with another intellectual disability.” They then studied the “gene’s effects in zebrafish, mice and cadaveric human brains.” Their gene research noted that the protein the gene made affected how “many other genes are regulated.” This CTNND2 gene protein was found in fetal brains far more often than in adult brains so the researchers postulated that the gene plays a key role in brain development.

Chakravarti and his team note that autism-causing variants in the CTNND2 gene are very rare. Nevertheless, they believe their gene research is helpful in learning the “general biology of autism.” The research team is now working to find out what the functions of the other three genes are that they believe may possibly be associated with autism.


Autism, ADHD and Sleep

I have both high functioning autism and ADHD. I have had sleep problems my entire life so I likely have a sleep disorder. It doesn’t help that I was raised to sleep in a quiet environment and when you have ADHD (which causes you to listen to every single creak in your house and every single sound your neighbors make), getting a decent night’s sleep can be tough. There are a variety of remedies to getting a good night’s sleep– and there are enough articles out on the Web about having your room at the right temperature, not watching lots of TV or playing video games before going to bed, getting exercise during the day and not taking a long afternoon nap etc.—so this is NOT one of those articles.

This article addresses what you WON’T see out on the Web routinely. First, I’ll discuss the meds. Physicians like to prescribe Trazodone, which is actually an antidepressant, although it is not used for that anymore, but instead it is used for sleep. I have used this drug for years but it does have side effects.  The most “common1:”

  • Blurred vision
  • Confusion
  • Dizziness
  • Lightheadedness
  • Sweating

Then there are the “less common1” side effects such as:

  • Burning, crawling, itching
  • Decreased concentration
  • Fainting
  • Lack of coordination
  • Muscle tremors
  • Headache
  • Nervousness
  • Shortness of breath ETC.

Then there are the drugs actually designed to fight insomnia like Zolpidem (Ambien). They are designed for the short term and can cause dependence long term. Most common1 side effects are:

  • Clumsiness or unsteadiness
  • Depression
  • Confusion

Then there are the over FIFTY “less common”1 side effects…here are some of the highlights:

  • Abnormal or decreased touch sensation
  • Appetite disorder
  • Confusion about identity, place and time
  • Difficulty with moving
  • Difficulty swallowing
  • False or unusual sense of well-being
  • Hearing loss
  • Lack or loss of self-control

A common over-the-counter drug used for sleep is Diphenhydramine (Benadryl), which is actually an antihistamine, but it has a side effect for many people of making them sleepy. Thus the drug is commonly used in sleep medications. Until the news this year that this medicine has been linked to the increased risk of dementia2, I found Diphenhydramine to be highly helpful as a sleep med to use without a prescription. But, frankly, I’d rather have a sleep problem than dementia.

Additionally, there are a variety of herbal and “natural” remedies used for sleep. The only one I personally found effective was chamomile—which I drink as a tea. I also previously used melatonin for sleep. Melatonin is a hormone that helps to regulate sleep and wake cycles. You can get it over the counter most commonly in 3 mg, 5 mg or 10 mg doses. (Note the update below).

So to summarize, medications (prescription or over-the-counter) can have significant side effects. Herbals are minimally regulated so their side effects may not be well known.  The most effective sleep remedy for me, in particular to counteract my ADHD, has been ear plugs to obliterate outside noise, chamomile tea, a Trazodone pill, along with concentrating on my breathing until I fall asleep.  Sure looking like a sleep disorder.

UPDATE Dec. 24, 2015³:  Turns out melatonin pills are not such a good idea to use on a regular basis as an adult or at all in children. The recommended dosage is 0.3 – 1.0 mg (according to research by MIT in 2001), but what you will find in the stores is 3 mg, 5 mg and 10 mg. Taking melatonin pills on a regular basis can ultimately lead to insomnia during the night and grogginess during the day.  So says neuroscientist Dr. Richard Wurtman of MIT and Michael Grandner, a sleep researcher at the University of Pennsylvania. Long term use also has been linked to reduced natural levels of the hormone in the body. In children, excess melatonin can “affect puberty, disrupt menstrual cycles and impede normal hormone development.”

In my case, I went from 5 mg to 10 mg in the mistaken belief that more melatonin supplement would help me sleep better. Exactly the opposite of what the above researchers are saying. Over time, I experienced increased insomnia at night and sleepiness during the day. But as soon as I stopped taking the melatonin, I slept better at night and was not groggy but more alert during the day. So no more regular melatonin for me.

Further edited Feb. 2019

Sources: Drugs.com1 (Jan 28, 2015)2 (Dec. 16, 2015)³

Welcome to my blog!

I started this blog so that I could relate stories from my childhood and adulthood to show what it is like to live on the autism spectrum. The idea is to increase compassion and understanding about autism. A lot of autism blogs out there are from caregivers. It’s important to get the perspective of people who actually have autism.