Are you a parent of a child with autism and have 15 minutes to spare? Please help the Karolinska Institutet with a survey

Karolinska Institutet - Autism Research
Karolinska Institutet – Autism Research
Earlier this week we were contacted by one of our readers who asked us to help find people to take a survey. Suzanne Axelsson, herself a mother with a  child on the spectrum told us “My husband is starting up some research into the sleep routines of children with autism. Sleep is an essential part of learning… and also social interaction… if we are tired it is harder to react appropriately to a given situation… and as I see with my own son, who has autism, he is depleted of his energy reserves sometimes rapidly by things that would hardly bother others… this means that good sleep hygiene is even more essential for my son”.
Her husband John Axelsson of the Karolinska Institutet , a leading medical university in Sweden, shared:
“Karolinska Institutet is currently conducting a study to explore the complex relation between autistic traits and sleep quality. 
While we know that sleep is often affected in this group, the underlying mechanisms remains largely unknown. 
If you have a child that has been diagnosed with an autism spectrum disorder or have autistic traits, you can contribute to this research by filling out a questionnaire about your child and his/her sleep, taking approximately 15 minutes. You will not be asked to provide any identifying information such as name or date of birth, meaning that your answers will remain strictly anonymous and confidential. The data will be used for developing better interventions to improve sleep quality and day time functioning in children with autism. 
 
Simply click on this link to participate (https://survey.ki.se/Survey/4695/en) but please make sure that you have 15 minutes to spend as you only can access the questionnaire once. 
Thank you very much for your time, and don’t hesitate to contact me if you have any questions! 
 
Associate Prof. John Axelsson, 
Dept. Clinical Neuroscience
Karolinska Institutet 

Does your child with autism spectrum disorder (ASD) experience sleep problems or gastrointestinal symptoms? Please help The Irish Centre for Autism and Neurodevelopmental Research


Irish Centre for Autism and Neurodevelopmental Research
Irish Centre for Autism and Neurodevelopmental Research
Does your child with autism spectrum disorder (ASD) experience sleep problems or gastrointestinal symptoms?

As you many of our readers will know we have been asking our readers to help The Irish Centre for Autism and Neurodevelopmental Research (ICAN) with various studies. They have contacted us to request our help with a new project.

They say “Some children with autism have both sleep problems and gastrointestinal symptoms, while other children have one of these issues or none at all. The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway is interested in hearing about your experiences with your child or adolescent aged 3 to 17 years with autism. We are interested in understanding how sleep problems and gastrointestinal symptoms affect both child and parent. Even if your child doesn’t have sleep or gastrointestinal problems, we can still learn a lot from your information on why some children have these issues and others do not. If you wish to participate, please use the link below.

http://bit.ly/1sYrzpp


Autism and Anxiety : “An Investigation of Anxiety in Children and Adolescents with Autism Spectrum Disorder” – The results of recent research from The Irish Centre for Autism and Neurodevelopmental Research h


Irish Centre for Autism and Neurodevelopmental Research
Irish Centre for Autism and Neurodevelopmental Research
You may remember that a few months ago (May 2014) we invited you to take part in a survey about autism and anxiety from The Irish Centre for Autism and Neurodevelopmental Research.

Today we are delighted to present the top line findings.

If you have any comments or questions please feel free to use the comment boxes at the bottom of this blog.

This study looked at the prevalence of symptoms.

• 10% of participants were found to have borderline clinical anxiety levels, while 75% of participants obtained scores which placed them in the clinical range for anxiety. This finding is particularly interesting as a diagnosis of an anxiety disorder was reported for only 25% of the sample.
• Gastrointestinal (GI) symptoms (i.e. nausea, bloating, diarrhoea, constipation, abdominal pain) were experienced by 80% of the sample within the last three months.
• Sleep problems were reported by 92% of the sample.
• At least one form of challenging behaviour (self-injurious behaviour, aggressive/destructive behaviour, stereotypic behaviour) was reported for 90% of the sample.


This study investigated the relationships between anxiety and other symptoms.

• Anxiety was found to be related to overall GI symptoms, indicating that higher levels of anxiety are associated with higher levels of GI issues. Specifically, nausea and constipation were found to be correlated with anxiety in this sample.
• Anxiety was found to be related to sleep problems, indicating that higher levels of anxiety are associated with higher levels of sleep problems in children and adolescents with ASD. Specifically, sleep onset delay, sleep duration, sleep anxiety, parasomnias, and daytime sleepiness were found to be correlated with anxiety levels in this sample.
• This study did not find an association between anxiety and challenging behaviour.

This study was also interested in looking at the factors which predicted anxiety.

• Sleep problems were found to positively predict anxiety in the current study. This means that high levels of sleep problems predict that an individual will also experience high levels of anxiety.
• Age was found to be a significant positive predictor of anxiety. This suggests that young people with ASD experience an increase in anxiety levels as they grow older.

Sleep disorders and children diagnosed with autism. Read some amazing information in our guest post from Dr. Sonya Doherty


Dr. Sonya Doherty
Dr. Sonya Doherty
Welcome to our latest guest post from Dr. Sonya Doherty. You can read the original post on her blog here. Dr. Sonya Doherty is a licensed and board certified Naturopathic Doctor who is an active member of the CAND. Sonya Doherty completed her undergraduate training at the University of Western Ontario in a Bachelor of Science Honors Kinesiology program.

You may be also interested in a recent discussion blog we ran which looked at this very subject!

If you have a child diagnosed with autism, or who you suspect is on the spectrum, chances are your child is having trouble getting to sleep or staying asleep.  Sleep is essential to support optimal development.  Research at the Arkansas Children’s Research Institute has identified that 90% of children diagnosed with autism havemethylation impairments . Methylation impairment can change the way children produce brain chemicals like serotonin, dopamine, GABA, glutamate and norepinephrine.  With respect to sleep, serotonin is a much need neurotransmitter.  90% of serotonin comes from the gastrointestinal tract.  Up to 85% of children with ASD have digestive problems including constipation, diarrhea, pain and gut flora imbalance.  Serotonin is converted to melatonin with the help of vitamin D.  Vitamin D deficiency is well documented in the autism focused medical research. 


Adequate magnesium levels are required for healthy sleep onset and maintenance.  Many children with autism and ADHD have magnesium levels that are lower than normal.  Magnesium deficiency is the 4th most common nutrient deficiency in North America.  Nutrient deficiencies, digestive problems and methylation impairment combine to negatively impact healthy sleep patterns in ASD.  Children who are experiencing developmental concerns are at a substantially higher risk of experiencing sleep disorders.  The children who need sleep the most are having trouble getting to sleep, staying asleep,  having restful sleep are early waking.

Addressing sleep issues in children with autism is multi-faceted.  Many parents have altered routines to accommodate their child’s imbalanced circadian rhythm.  Putting children to sleep much later than same age peers, results in an exhaustion cycle that exacerbates behaviours and sensory overload.  Your child’s body has two ways to get to sleep. One is at their age appropriate bed time which is supported by appropriate melatonin levels.  The melatonin signal is initiated by darkness and regulates the sleep-wake cycle by causing drowsiness.  Limiting TV, iPads and other screens in the evening is important for children with sleep onset insomnia.  Blackout blinds are also crucial to help support the repair of your child’s sleep cycle.  Melatonin production must be stimulated to increase documented low levels experienced by children with an autism diagnosis.  Use of melatonin is an important “band aid” treatment during this time as children’s methylation cycle is supported and repaired.  Other helpful sleep supports include magnesium glycinate, GABA, L-theanine and botanical medicines like valerian, skullcap, lemonbalm, zizyphus and passionflower.

The importance of melatonin in the management of sleep disorders and gastrointestinal problems in children diagnosed with autism spectrum disorder:

One of the most common questions that I am asked by parents is about melatonin safety.  “Is it safe to give my child melatonin?”

I think the below information will make it clear that it may be unsafe not to give your child with autism melatonin.

The International Child Development Resource Center performed a systematic review and meta-analysis on melatonin and autism.  Their findings show that most children diagnosed with autism have:

  • Abnormalities in their melatonin levels
  • Gene abnormalities that contribute to lower melatonin levels
  • Show positive changes with respect to sleep duration, onset and night time waking
  • Show improvement in autistic behaviours

Sleep problems in autism usually start at the same age as developmental regression, suggesting a higher vulnerability at this period of life. Healthy sleep patterns are essential to support neuroplasticity and development so it is important to address sleep disorders as soon as possible.  According to the Center of Pediatric Sleep Disorders, studies of melatonin use in children with ASD provide evidence for its effectiveness and safety in the long run.

Melatonin, however, has a larger role to play in development beyond its function as a synchronizer of the biological clock. Melatonin is a hormone that helps in the regulation of the gastrointestinal system.  The gut is 100% responsible for post-natal development.  In the gut, melatonin, governs intestinal reflexes, motility, the immune function, gut secretions, energy balance, pain regulation and protects against inflammation.  The gut contains at least 400 times more melatonin than the pineal gland  The GI tract produces its own melatonin which suggests it plays a large role in maintaining gut health; both in a healthy digestive tract and in gut disorders.  Children diagnosed with ASD have alterations in their gut flora in addition to higher prevalence of constipation, diarrhea, reflux and pain.  The balance of good bacteria is not the same as typically developing children.  Melatonin levels change gut flora and improve anti-microbial actions.  With the startling numbers of children experiencing both gut issues and sleep issues, this new research about melatonin’s role in gastrointestinal health could provide clues about treatment and repair of these biological systems.

Other interesting information about melatonin:

  • Melatonin is also synthesized by the bone marrow cells, white blood cells, mast cells and skin cells
  • It is a powerful antioxidant
  • Melatonin helps to protect mitochondria from oxidative stress which damages cells
  • Melatonin also helps to support glutathione production.  Glutathione is widely considered the most important antioxidant in the body.  In another study, The Arkansas Children’s Research Institute found that children diagnosed with autism have up to 80% of their glutathione depleted.  Glutathione depletion may be part of the central mechanism for developmental delay because the role it plays in protecting the brain from toxicity
  • There is research to support that melatonin helps to support healthy immune function by fighting infectious disease including viral and bacterial infections
  • Melatonin has shown some promise in modulating the immune function in autoimmune disease

Autism and Challenging Behaviour Part Nine – Getting to sleep and staying there.


Autism and sleeping
Autism and sleeping

Actually this is also an issue shared by most parents/caregivers of children when they are first born.  One can tell parents of new born babies  as they walk down the road by the zombie-like expression on their faces and occasional habit of going to sleep mid-conversation.

Problem is that for parents of children with autism this can go on for a long, long time after other children are snuggled up in bed.

In AutismTalk (https://www.facebook.com/AutismTalk), our Facebook discussion page, people often write in asking questions about how best to get their children with autism a  good night‘s sleep.

Now, I should mention that our son John has over the years developed reasonably regular sleeping habits. Although he is a nightmare when jetlagged.  But then so am I……………..

These days he sleeps from around 10 o’clock in the evening to around 7o’clock the next morning.  So we know we are doing pretty well considering.  That being said he likes to have a snack before going to sleep (in his case either an apple or a pear) and needs to be cuddled as he drops off.  Oh, and he will often re-appear in the middle of the night to check we are okay. 


I can generally tell when this has happened by the kick which emanates from the middle of the bed where he has placed himself.  He has a bath generally after his supper a few hours earlier.

But I know that even though he goes to sleep much later than we would like we are much better off than many parents.  Indeed I’ve heard of some children and adults who hardly sleep. Sometimes just a few minutes at a time.

The aim of this blog post is to give you an opportunity to share your autism and sleeping story.  In particular what methods you have employed to improve the situation.  You might like to consider some of the following questions when giving your comments and sharing your experience:-

1) Can you describe your or your loved one’s sleep patterns and how they have developed/changed over the years?  For better or worse?

2) If you or your child has poor sleeping patterns what effect does this have on the people around your?

3) What techniques have you used to develope a more “normal” sleeping pattern?

4) How successful have they been?

Please feel free to share anything with our readers you think will be of value in the comments section below.

Finally, is it possible for it NOT to be a problem that somebody only sleeps for a shorter time than the eight hour norm?  I know a number of people who really only sleep for a few hours a day and do not suffer from sleep deprivation. Is this ever the case with a person with autism?

Thanks very much in advance.