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Parents are people too

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Sometimes parents get a bad rap for not having autism themselves, or not being in touch with the challenges of autistic adults.  This week’s ASF Podcast highlights two new studies on the role parents play in science, research and understanding racial disparities.  A group in the United Kingdom released the results of a survey across Europe which examined parent perceptions on early autism research (think infants and toddlers) and how researchers could better help families at this stage.  Another study from researchers in Georgia and Connecticut revealed how important parents (and clinicians) can be in reducing the disparity in diagnosis between black and white children in the US.  Finally, a call to unite over a common challenge: employment.  If you have not done so already, please make your voice heard as a parent, autistic adult, employer or service provider on a survey gauging the needs of the entire autism community around employment.  http://www.lernerlab.com/employmentsurvey.html 

 

Here are the references used in this podcast:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230972/ 

https://www.autismspeaks.org/sites/default/files/docs/as_science_planning_survey_final_pdf_0.pdf

https://www.ncbi.nlm.nih.gov/pubmed/29126359

https://www.ncbi.nlm.nih.gov/pubmed/29100475

 

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Let’s talk about sex (and sexuality)

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While certainly not a new topic of interest, the number of research studies and publications on the sexuality of people with autism has exploded in the past year.  Research shows more people with autism reporting they don’t conform to traditional sexual definitions.   In addition to having to navigate the world of having autism, they also have to figure out how to deal with exclusion based on sexual orientation and coming out.  They are a double disadvantaged community.   Also, females with autism seem to be at particular risk of poor sexual experiences.  This podcast reviews the research all leading to a reported need for better sexual education, and a promising intervention to help people with ASD.  Publications cited are:

 

https://www.ncbi.nlm.nih.gov/pubmed/29086210

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5570786/

https://www.ncbi.nlm.nih.gov/pubmed/27565655

https://www.ncbi.nlm.nih.gov/pubmed/28877047

https://www.ncbi.nlm.nih.gov/pubmed/28342163

https://www.ncbi.nlm.nih.gov/pubmed/28299510

https://www.ncbi.nlm.nih.gov/pubmed/28691307

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Resources and Services for Adolescents and Young Adults

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Thank you to Sonia Agarwal, smart, efficient and eloquent ASF summer intern for putting together a summary of resources and services and rights for adolescents and young adults with autism, focusing on those who are not intellectually disabled.  They include resources for transitioning into college and support programs at college, with tips and hints along the way.  Sonia has a younger brother with autism and is committed to helping families access the help they need.

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It’s not about THC, it’s about CBD (cannabinoids)

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Parents of children with seizures are desperate to find something that will at the very least reduce the frequency of seizures in their kids.  Answers came in an unlikely place two months ago with the publication of a randomized clinical trial showing that seizures could be reduced with use of cannabinoids in kids with a condition called Dravet’s Syndrome.  Cannabinoids are one of the chemicals found in marijuana, and there are anecdotal reports on the use of marijuana or cannabinoids to treat autism.  Unlike THC, CBD (cannabinoids) do not cause euphoria or any psychoactive effects and are used exclusively for medicinal reasons.  This podcast summarizes current literature and also explains why it is so hard to study cannabinoids, including federal and state regulations and what needs to happen to open up this field of science

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The Benefits of Being and Older Father

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Advanced paternal age is one of the more replicated risk factors for autism – but maybe not autism as it as seen as a disorder.  Recent studies by Mount Sinai School of Medicine and Kings College of London show in both animal models and in epidemiological studies that advanced age in fathers is associated with the “active but odd” phenotype and PDD NOS.  In people, older (but not “old”) age in fathers led to increased IQ and social aloofness that led to higher academic achievement.  Is this autism?  Or just a subtype of autism where the outcomes are adaptive rather than maladaptive?  There are lots of questions about the nature of autism in these findings.

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Brain tissue: what has it done for autism lately?

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In order to ensure that researchers have enough brain tissue to understand autism spectrum disorders, the education and outreach campaign is being expanded past families to doctors and professionals that have access to tissue.  One of these groups is neuropathologists.  At their annual meeting this past week in Los Angeles, and entire afternoon was spent dedicated to autism and the features of autism in the brain.  A summary of the presentations is included in this podcast. Speakers emphasized that the way the brain works in childhood is not the same way it works in adulthood, and a study out of UCSD showed that the genes that are affected in children with autism are different than those in adults with autism.  The mechanisms of genes controlling the developing brain vs. those which affect ongoing maintenance are different.  This calls to make sure scientists understand all ages of people with autism, because as the brain changes, so do the needs of people with ASD.

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What treatments are lacking sufficient evidence for autism?

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This week two new publications reported on systematic reviews for nutritional and sensory treatments for ASD.  This means the existing research was sorted, summarized, scrutinized and evaluated.  They found insufficient evidence to show any dietary or nutritional therapy was effective, but sufficient evidence that sensory integration therapy helps people with ASD.  In light of new data on heavy metals found in baby teeth, it’s important to remember that chelation is NOT effective and dangerous.  While “insufficient evidence” does not rule out these interventions forever and always, lots more needs to be done in these areas to conduct rigorous experiments that don’t have any major shortcomings so they hold up to scrutiny.

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Memorial Day Memoriam: Isabelle Rapin

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This week, autism lost a pioneer and advocate for autism research:  Isabelle Rapin, MD, a neurologist from New York’s Albert Einstein University.  The first part of the podcast is a brief summary of her accomplishments.  The second part is an study called “how to keep your child out of the hospital”, presenting a recent study which looked at risk factors for being an inpatient, rather than an outpatient.    These risk factors may not be able to be prevented, but hopefully through identification of what they are, situations might be managed to help those with autism and their families during a crisis situation.

 

 

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What is the focus this week? The unsung heroes of grandparents and clinicians

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Scientists have studied males compared to females with autism, but rarely has there been studies about what clinicians see as differences in these two groups.  Given that they provide insight on diagnosis, needs and access to services, it is kind of important to talk to them, and a study out this week in the journal Autism did just that.  You can find the full text here:

http://journals.sagepub.com/eprint/V5p3isSVAKDbdQf2jH4Q/full

Also, scientists are starting to understand the role of exposures in parents and how they affect diagnosis of autism in their children, but this week a new wrench was thrown into the wheel:  researchers in the UK found that grandparental exposures play a role in autism diagnosis too.  Luckily, this too is open access and you can read it for yourself.  It was covered in the media and we have perspective from a parent included.

https://www.nature.com/articles/srep46179

I discuss this second project with Jill Escher, founder of the Escher Fund for Autism and co-funder of the study.

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That new study on mortality in people with autism…..

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…..may be overestimating the risk of drowning and suffocation in those with ASD.  The study claims a higher rate of drowning and other accidental deaths in people with autism, which is true, but the magnitude of the effect they found was astronomical and misleading given the methodology.  They counted people with autism off of information on their death certificate.  Not everyone with autism has this code listed on their death certificate – so likely this number is underestimated and the risk of drowning overestimated.  The shocking results call for things like swimming lessons in those with autism and other drastic safety measures.  People with autism ARE at a higher risk of drowning and we should all pay attention.   Ways to prevent accidental death in people with autism are needed and the overall message should be the same.  But the numbers themselves are probably a little off.