Getting a Present Social Story

Getting a present

This social story helps teach what a gift is, what it means, and the steps that are expected when getting a gift. It also teaches about the emotions involved with gift getting. You can download a pdf version here.

Rosie King: How autism freed me to be myself

This girl is just amazing.  What an advocate.  You can listen to a little of her story here.

What is Extended School Year?

Extended School Year (ESY) is a legal term that refers to services provided by your school district when school is not regularly in session.  The discussion about whether or not ESY is needed should happen at the annual IEP meeting.  Learn more about what ESY is here.

  • If you think a child needs ESY start preparing early.  You’ll need documentation to support the claim and this can take a while to pull together.
  • Many school districts only focus on “regression-recruitment”.  All children regress over breaks, but for children with disabilities, this regression could be much more pronounced.  Although this is an important criteria for ESY it should NOT BE THE ONLY criteria.  You can learn more about other criteria here.
  • Advocating for ESY can be contentious.  This website provides many advocacy strategies.

This is the most recent documentation we have from Champaign Unit 4 schools regarding ESY.  If you have more up to date communication or information from other districts, please contact us.

Four Steps of Communication with Michelle Garcia Winner

Michelle Garcia Winner (she is the person behind “Social Thinking”) and a young man on the autism spectrum teach us about social communication.

Gastrointestinal Symptoms and Autism

GIWhat are gastrointestinal symptoms?

When people talk about gastrointestinal (GI) symptoms and autism they could be talking about a variety of different things including constipation, diarrhea, abdominal bloating/discomfort/irritability, gastroesophageal reflux/vomiting, or food selectivity/feeding issues.  Sometimes they may be referring to GI diseases like Crohn’s disease (an inflammatory bowel disease) or Celiac disease (an immune reaction to eating gluten).

Do children with ASD have more gastrointestinal issues than typically developing children?

Most evidence indicates that children with autism are no more likely then the general population to have GI diseases and are specifically no more likely to have ciliacs.  There is some evidence that children with autism do have higher rates of food selectivity/feeding issues and constipation.  Even though children with autism may not be more likely then typically developing children to experience tummy trouble, they still experience GI issues frequently (as many as 24% of children with ASD).  Diarrhea is the most common issue for children with ASD.  Having said that, GI issues among children with ASD may be under reported because parents or doctors may miss understand why the child is upset or uncomfortable.

GI difficulties may be particularly difficult for children with ASD.  They may not be able to communicate that they are uncomfortable or in pain.  The lack of regular bowel movements may cause disruption to important routines which may cause a child additional distress.

What causes children with ASD to have gastrointestinal issues?

It’s not clear that the causes of GI issues in children with ASD is different from typically developing children.  There are many things that  can cause GI issues in children such as anxiety, food allergies, food sensitivities, food born illnesses, and GI diseases.  There are some issues that are particularly important for children with ASD.  If a child with ASD has a very selective diet they may be missing out on vital nutrients that could lead to GI issues.  If a child with ASD is presenting with behavioral issues, GI issues, especially pain, maybe an underlying cause even if the behavioral issues appear to be unrelated to food.

There are a couple theories that are related to GI issues and ASD that don’t have much support.  The first is a theory of abnormal gastrointestinal permeability often called “leaky gut” theory.  This theory suggest that a “leaky gut” actually causes autism and autism symptoms and that gluten and casein should be completely avoided.  The research on this theory has methodological problems (like using very small sample sizes or only looking at children with ASD and a GI disease).  There’s another theory that there’s a specific GI disease only found in children with ASD called autistic enterocolitis, however the same symptoms are found in typically developing children.

Can a special diet help my child?

If your child has a food allergy or intolerance eliminating that food item can help reduce physical discomfort that maybe contributing to additional distress and even causing behavioral problems.  Similarly, if your child has a selective diet and is failing to get specific nutrients, helping your child to expand their diet could reduce GI issues.  Before making diet decisions, it’s important to talk to a doctor.  Any individual with ASD who presents with GI symptoms should have a full evaluation preferably by a GI specialist.

No diet can cure a child of autism.  A diet cannot treat the underlying causes of autism.  If you’re child has GI issues than a diet maybe a treatment option for those issues.  GI issues may be a cause of problematic behavior and therefore a diet may reduce problematic behavior.

Where can I get more information?

The book Special Diets for Special Kids is a great resource for learning how to implement a special diet.  Can’t Eat, Won’t Eat is a book the focuses on overcoming selective eating.  Web MD has a nice article explaining the Gluten Free-Casein free diet.  Autism Speaks has a regular series featuring a GI doctor with experience with autism.

References

Ibrahim, S. H., Voigt, R. G., Katusic, S. K., Weaver, A. L., & Barbaresi, W. J. (2009). Incidence of gastrointestinal symptoms in children with autism: a population-based study. Pediatrics, 124(2), 680-686.

Molloy, C. A., & Manning-Courtney, P. (2003). Prevalence of chronic gastrointestinal symptoms in children with autism and autistic spectrum disorders. Autism, 7(2), 165-171.

White, J. F. (2003). Intestinal pathophysiology in autism. Experimental Biology and Medicine, 228(6), 639-649.

 

Is Asperger’s a real diagnosis?

Diagnosis is a medical term for a label that helps professionals communicate about the cluster of symptoms they see in a person they are treating.  The criteria for making a diagnosis follow the DSM 5 Manual.  As of the May 2013 publishing, Asperger’s is no longer a specific diagnosis.  The behaviors, challenges, and symptoms still exist for an individual but will no longer be medically labeled Asperger’s.

Asperger’s isn’t the only diagnosis that changed- all the autism diagnoses changed with the new edition of the DSM.  Instead of there being several autism related diagnoses (autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified)  there is now one diagnosis called autism spectrum disorder or ASD. According to the American Psychological Association, this will help  to more accurately diagnose all individuals showing the signs of autism.

For more information about these changes see the Autism Society’s response to the change.

If you want a history of the change and opinions from both sides- this is a great news article from Slate.

Autism and Sleeping Problems

sleepDo children with autism have more sleeping problems then typically developing children?

Yes, studies have shown children with ASD to have as many as 10 times more sleep difficulties than typically developing children.  Problems include not falling asleep, sleeping for only short periods of time, being tired during the day, resisting going to bed, sleep walking, sleep anxiety, nightmares, and chronic insomnia.

What causes children with ASD to have sleep problems?

There is no clear cause.  Children with ASD have several different types of sleep problems; different types of problems may have different causes.  Also, it’s best not to think of ASD as one disorder but as a spectrum of disorders so different people have different things going on in their genes, gene expressions, and environments which may cause a variety of different sleep problems.  Some theories are

  1. Some children may have biological or genetic abnormalities that cause changes to the brain which then effect sleep
  2. The features of ASD (such as preoccupation) can prevent sleep
  3. There could be factors at home that make sleep more difficult (like having a TV in a bedroom)

How do experts recommend that parents deal with sleeping problems?

Research has indicated that behavioral strategies can may be effective, however there is not enough research to say so with certainty.  Right now, there is the most evidence for scheduled awakings (awaking a child at scheduled intervals to reduce night terrors) and standard extinction (ignoring all bed time disruptions- this may look like putting a child to bed and then not talking to the child until morning).  Although standard extinction may be effective, it can cause distress for the child and the parents.  Other interventions under investigation are

  • Graduated extinction (only ignoring behavior for a specific length of time)
  • Faded bedtime (setting the bedtime slightly earlier and earlier and not letting the child sleep during the day)
  • Faded bedtime with Response Cost (the same as faded bedtime, but if the child does not fall asleep, you remove them from bed for a specific amount of time- eg. 30 minutes)
  • Sleep restriction (the focus is on sleep duration not bedtime- you limit the amount of time the child spends in bed not sleeping)
  • Stimulus fading (reducing co-sleeping)
  • Chronotherapy (pushing back bed times)

Is medication recommended for sleep problems?

When behavioral interventions are unsuccessful or only partially successful, sometimes medication is prescribed, however there is no FDA approved pediatric sleep medication.    Melatonin has been the most commonly studied sleep medication for children.

Where can I get more information?

We have books on sleeping and autism in our library.  Also, the Lovaas Institute has a great article with several recommendations for establishing a good sleeping pattern.

References

Cortesi, F., Giannotti, F., Ivanenko, A., & Johnson, K. (2010). Sleep in children with autistic spectrum disorder. Sleep medicine, 11(7), 659-664.

Goldman, S. E., Richdale, A. L., Clemons, T., & Malow, B. A. (2012). Parental sleep concerns in autism spectrum disorders: Variations from childhood to adolescence. Journal of autism and developmental disorders, 42(4), 531-538.

Richdale, A. L., & Schreck, K. A. (2009). Sleep problems in autism spectrum disorders: prevalence, nature, & possible biopsychosocial aetiologies. Sleep medicine reviews, 13(6), 403-411.

Sivertsen, B., Posserud, M. B., Gillberg, C., Lundervold, A. J., & Hysing, M. (2012). Sleep problems in children with autism spectrum problems: a longitudinal population-based study. Autism, 16(2), 139-150.

Vriend, J. L., Corkum, P. V., Moon, E. C., & Smith, I. M. (2011). Behavioral interventions for sleep problems in children with autism spectrum disorders: current findings and future directions. Journal of pediatric psychology, 36(9), 1017-1029.

 

Neurotypical

Neurotypical is a documentary from the perspective of individuals with autism discussing what they think about individuals without autism.  We’ve included the preview of the 50 minute documentary, but you can stream the entire film.

Where should my child be tested or get diagnosised?

Though diagnosis by a medical professional (MD or PhD) is necessary for certain documentation and programs, the wait for an assessment can be long.  Being assessed and treated through your local school district or counseling provider can be a first step while awaiting formal diagnosis.

Medical professionals in East Central Illinois who offer diagnostic services are:

What are the best interventions for children with ASD?

This is a tricky question to answer.  Individuals with ASD are complex and unique so finding ways to best support them depends on the individual and their goals.  Below, we’ve outlined a few interventions that you would want to be familiar with.  On our “Community Autism Specialists” page we have contact information for area resources.  Support groups are another great way to learn about what works for families.  Here is a complete report on Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder.

ABA

ABA is short for Applied Behavior Analysis.  ABA breaks down complex tasks into small pieces and then individuals (usually children) are taught one small piece at a time.  When a child is successful they get rewards.  Over time, the therapist teaches more complex skills and with fewer rewards (ABA needs to be implemented with an ABA therapist).  This intervention has been the study of a lot of research and is typically considered to be effective.  We have several books on ABA in our library.

Floortime

Floortime is a strategy in which parents and professionals play with young children at their level and in doing so help expand their communication and social skills.  This approach, developed by Dr. Greenspan, starts with following the child’s lead and then building upon that to expand the child’s world.  Compared to ABA, this approach is more child centered and naturalistic but it may be less successful for teaching concrete tasks.  The P.L.A.Y project offers Floortime and you can learn more about Floortime with books and DVDs from our library.

PECS

PECS is short for picture exchange system.  It is one of the most common communication interventions used with children with ASD especially those with significant communication impairments.  Children with ASD often have difficulty communicating their basic wants and needs.  This intervention focuses on giving them a tool (pictures) to communicate.  Over time the goal is to use the pictures to exchange for items, build sentences, and answer questions.  We have several books on PECS in our library and we can make PECS pictures for you in our resource room.

Social Narratives

Social narratives help teach learners about social relationships, social thinking, and what to expect in different social situations.  We can create social narratives for your child/student’s individual needs.  We also have books on how to create and use social narratives.

The Incredible 5-Point Scale

The Incredible 5-Point Scale is a visual strategy that helps individuals with autism learn about regulating emotions.  Sometimes children with ASD seem to go from calm to meltdown very quickly.  This tool helps them to understand their emotions and put them in perspective.  It is also used to teach strategies for managing difficult emotions.  We can make many adaptations of the 5-Point scale in the resource room and have books on how to implement the strategy.

We didn’t want to overwhelm you so this is a pretty short list.  From here, we would recommend browsing the intervention books in our library (either online or in person).  There are also some great websites that give more comprehensive information about interventions.  Autism Speaks has a nice summaries of a variety of different supports and videos so you can see them in action.  Autism Internet Modules provides online training for learning many interventions available.  They focus on evidence based interventions so their list of interventions also serves a great for what are best practices (not just common practices).

Medical Interventions

There are no medications that have been specifically developed for individuals with ASD, however, some medications are often prescribed to help children (and adults) focus, manage emotions, and learn better as well as manage other challenges individuals with ASD may face (like difficulties sleeping or irritable bowel syndrome).  If you’re considering medical options the free “Medication Decision Aid Tool Kit” from Autism Speaks may be useful or the book Taking the Mystery Out of Medications in Autism/Asperger Syndromes.

TED talk from Ami Klin

Ami Klin (an award winning researcher in the field of Autism Spectrum Disorder) discusses how autism develops and how autism might be diagnosed in the future.

Rosie Explains Autism

In this video (from the BBC) Rosie explains what autism means to her as a person diagnosed with Asperger’s and a big sister to a boy with more severe autism.  This video really highlights the autism spectrum and discusses the challenges associated with autism from the child’s point of view.