Autism and Preparedness

Father and Son

There is a new neighbor on Sesame Street. Her name is Julia and she’s helping dispel decades-old stereotypes about autism. Julia is a little girl with autism and her move to “where the air is sweet” coincided with April being Autism Awareness Month. Our new neighbor is helping us think about the challenges of parenting a child of autism. One of those challenges is preparing children with special needs for public health emergencies.

Children are affected by disasters differently than adults. Mental stress from a disaster can be harder on children because they may not understand what is going on around them and don’t have experience bouncing back from difficult situations. Having autism can further compound this stress for a child and their family.

Any parent of a child with special needs will tell you that it takes patience and perseverance to accomplish even everyday tasks. Preparing your child for something as potentially disruptive as a natural disaster might sound stressful or maybe even seem impossible depending on the exact needs of your child. Here are some tips we hope will help.

Small change…big problem

As you are well aware of, minor change of plans can cause big problems for children on the autism spectrum. While it might seem daunting to imagine how responding to an emergency such as a tornado warning might impact your son or daughter, thinking through all of the potential complications can help you prepare for your child’s specific needs.

Prepare for immediate needs long before disaster

Start by assembling the same tools and resources as you would for any child. That includes creating a basic emergency supplies kit and making a family emergency plan. Then add a few items specific for your child’s particular needs. You’ll want to include:

  • Medical ID for your child
  • At least a 3-day supply of all medicines
  • List of your child’s triggers and helps for behavior issues
  • Names and contact information for all doctors and therapists
  • Complete list of your child’s health records
  • Names and serial numbers for medical equipment

Don’t forget that it’s important to keep all your kits and supplies, including medical devices, in a handy location. Also, if your child with autism is able to communicate and to follow instructions, give them a developmentally-appropriate version of your family’s emergency plan.

Wear your inner strength on the outside

Your child with autism may be particularly in tune with the moods of the adults around them and may sense stress, anxiety, and frustration, and then mimic the mood or behavior. The best way to prepare for being able to express your inner strength is to regularly take care of yourself. Utilize respite care services and don’t be afraid to ask for help. Regularly reaching out to your network of friends, relatives, and/or co-workers for assistance will help you practice in case of an emergency situation.

All these things can help to give your special needs child a sense of security and safety, before, during, and after the disaster.

Resources

2015 Samuel Johnson Prize Goes to NeuroTribes, by Steve Silberman – First science book to win UK’s top nonfiction book award

ssTo mark the publication of the book NeuroTribes (Aug 25, 2015; Avery/Penguin Random House) by Steve Silberman, whose blog of the same name has been hosted on the PLOS BLOGS Network since 2010, we invited independent science writer Emily Willingham, PhD to review

Trump and GOP candidate docs debate science! Should vaccine schedule be slowed?

GOP CANDIDATES DEBATE EARLY VACCINATION Oh, goody. Donald Trump again, this time at Wednesday night’s debate among the legions of Republican Presidential candidates, repeating his long-standing declaration that childhood vaccination causes autism. A claim that–need I even say it?– has … Continue reading »

The post Trump and GOP candidate docs debate science! Should vaccine schedule be slowed? appeared first on PLOS Blogs Network.

NeuroTribes: Steve Silberman on a haunting history and new hope for autistic people

To mark the publication of the book NeuroTribes (Aug 25, 2015; Avery/Penguin Random House) by Steve Silberman, whose blog of the same name has been hosted on the PLOS BLOGS Network since 2010, we invited independent science writer Emily Willingham, PhD to review the book and conduct an … Continue reading »

The post NeuroTribes: Steve Silberman on a haunting history and new hope for autistic people appeared first on PLOS Blogs Network.

Autism Gene Discovery Recalls Alzheimer’s and BRCA1 Stories

Discovery of a new gene behind autism cleverly combines genetic techniques new and classic. Autism has been difficult to characterize genetically. It is probably a common endpoint for many genotypes, and is a multifactorial (“complex”) trait. That is, hundreds of genes … Continue reading »

The post Autism Gene Discovery Recalls Alzheimer’s and BRCA1 Stories appeared first on PLOS Blogs Network.

Remembering The Pre-Vaccine Era: The Diseases of Childhood

Many of us of a certain age have vivid memories of the “diseases of childhood.” We remember missing weeks of school, sky-high fevers, spots and pox, cheeks so puffed from mumps that eating was impossible, for days. Our mothers, for … Continue reading »

The post Remembering The Pre-Vaccine Era: The Diseases of Childhood appeared first on PLOS Blogs Network.

Vaccine Memories: From Polio to Autism

Salk_Thank_You“April 15 – Polio Vaccine Perfected!!!!”

So wrote my mother in 1955, on the “Baby’s Health Record” page of my baby book. I unearthed it a few days ago while looking for some old writing clips.

Just a …

The post Vaccine Memories: From Polio to Autism appeared first on PLOS Blogs Network.

Velasquez-Manoff opinion piece in the NY Times on autism, parasites & inflammation; nice ideas; not enough caveats

There is a very interesting "Opinion" piece in the New York Times today: Immune Disorders and Autism - NYTimes.com.  By Moises Velasquez-Manoff is details some recent work that the author believes relates to autism and a variety of other human ailments with an autoimmune connection.

The general logic/key points seem to be as follows:
  • Some autism cases look like a form of inflammatory diseases with the immune system overactive (inflammation on high, anti-inflammation on low, or some combination thereof)
  • Infection of a mother during pregnancy increases the risk of having a child with autism.
  • In animal models, inducing inflammation in the mother (even without an infection) leads to an increased risk of behavioral "problems" in her offspring
  • Inflammatory and/or autoimmune diseases (e.g., asthma) have increased in incidence along with autism.
  • If a mother has automimmune or inflammatory diseases such as rheumatoid arthritis celiac disease she has a higher risk of having a child with autism.  Similarly if a mother has allergies or asthma during the second trimester, there is a higher risk of having children with autism.  
  • Many automimmune and inflammatory disorders and autism are all more prevalent is the developed world.
  • The developed world is generally cleaner that the developing world.  
  • There are many fewer parasites in people in the developed world.
  • Parasites are known to suppress inflammation.
  • Therefore, we may be able to stop/limit autism, asthma, and other inflammatory diseases by purposefully infecting people with parasites from our evolutionary past. 
Now, personally, I like the general hypothesis here.  It makes complete sense.  But alas, it is suffers from this issue that is spreading almost as fast as these diseases - a lack of a discussion of the distinction between correlation and causation.  I have been obsessing about this a bit recently with studies of the microbiome.   Overall, I do like this current article.  It mixes human epidemiological studies with controlled animal studies with discussion of conceptual models.  But alas there is really no discussion of the challenges if disentangling correlations vs. causation. And I think it is a bit dangerous in the latter parts with the jump to potentially curing these various ailments by purposeful infection with parasites.  Again, I like the idea.  But a few caveats would have been nice.  I am glad it was marked as an opinion piece but even when one states an opinion about a medical issue, one can still say "there are reasons why this might not be true .. such as ...".  Too bad that wasn't done here.

UPDATE - Emily Willingham has written a VERY detailed critique of the article that I think everyone interested in anything related to this topic should read: Emily Willingham: Autism, immunity, inflammation, and the New York Timeswww.emilywillinghamphd.com.