Resources for Parents
When we travel, we always wear our Asperger Works buttons, which inadvertently results in parents, whose young children have been recently diagnosed with Asperger’s or autism, asking us for information. We try to help as best we can with success stories from our friends and encouragement about the future of their children. Often these parents feel totally alone and completely frustrated by the inadequacy of the help their children receive.
Although our main thrust is to help adults, we could not ignore these cries for help. This page hopes to assist parents of children with autism, but especially those with Asperger’s, find information that may aid them and their children.
A huge national study now has openings for infants (0-6 months old) who are siblings of children with ASD. The study involves following these high-risk infants for several years to learn about the causes of autism, how to prevent it, and how to treat it. Please see the attached flyer for details, or go to https://www.gemma-project.eu
If you have a child with autism, there is an 18% chance that future children will also develop ASD, so it is important to monitor them closely. Enrolling in this study will help evaluate their development, and there is an optional treatment to consider if they are diagnosed with autism.
Click here for more on the Gemma Study
When we have a child with any kind of disability, the child, their parents and family, and strangers seem to focus on “bad behavior.” The blog post, Is It Really Bad Behavior? Finding the Positives through Reframing by Jack Taulbee, Ed.M., M.A., suggests that we should look at our children’s behaviors in a positive way, using positive words to describe behaviors that, upto now, we used words that are actually negative. This shift in wordage. he calls reframing.
Following are a few practice examples illustrating negative to positive reframing:
- Obsessive – Tenacious
- Compulsive – Thorough
- Talkative – Gregarious
- Easily distracted – Easily fascinated
- Emotional – Influential, Charismatic
- Controlling – Convincing
- Impulsive – Inquisitive
- Obstinate – Determined, Persistent
- Aggressive – Assertive achiever
- Opinionated – Confident
- Hyperactive – Energetic
- Isolated – Selective
- Immature – Innocent
- Dramatic – Powerfully vivid
- Disorganized – Creative
- Oppositional – Independent
In order to help with a child’s self-esteem, we should be ready to use positive words in place of words with negative connotations. Mr. Taulbee suggests that whenever we find a behavior that we would be tempted to describe using negative words, we should find its adjective and use that instead. That is, we should use reframing.
Often parents of autistic children are worried about taking them to public places. Our board secretary’s daughter (who was diagnosed with Asperger’s around the age of 40) would begin to wail as soon as the family was seated in a restaurant – any restaurant. Her parents were perplexed about this behavior. Had they known that she was on the Spectrum, they would have realized that the noise of the people and maybe even the smells and lighting were the reasons behind the behavior. They were fortunate that they were not approached by people offering parenting advise.
But often people feel the need to let parents know how they should be bringing up their children. Rude Comments and Autism (MyAutismTeam) is a blog post that addresses the issue that parents of children on the Spectrum often face: unsolicited and often offensive comments from strangers. Featured are a few question-and-answer threads and some conversations about dealing with rude comments.
“Despite an increase in diagnoses, the precise cause of autism spectrum disorder remains mysterious. Researchers have studied many factors that are believed to have a causation or correlation relationship to ASD. Numerous research studies, such as this article published in the medical journal The Lancet Neurology, have investigated the impact of exposure to heavy metals on the risks of developing autism spectrum disorder and other neurodevelopmental disabilities—especially during infancy and early childhood.” In the post entitled, Can Heavy Metals Found in Baby Food Cause Autism? What Parents Need to Know About Toxic Baby Food Lawsuits, Richard Console, Jr. addresses the following:
- What Baby Foods Have Heavy Metals?
- What is Autism?
- When Do Children Show Symptoms of ASD?
- Can Heavy Metals in Baby Food Cause Autism?
- Why Does Baby Food Contain Heavy Metals?
By now most parents know about Julia on Sesame Street (see Julia below). Meet Julia again on Monday, 4/5 and Thursday, 4/8.
This year more and more children’s programs are introducing autistic characters. We meet Carl, who can focus on the minutest details on Author (Friday, 4/2 through Wednesday, 4/7). Hero Elementary features AJ, who uses his autism as an extra superpower (Friday, 4/2). Dennis is the smartest dino in Dinosaur Train‘s Conductor Academy. Xavier Riddle and the Secret Museum features a young Temple Grandin (Monday, 4/5). And, Daniel Tiger’s Neighborhood features
O the Owl who has sensory issues (Wednesday, 4/7 and Thursday, 4/8).
Play is an important part of a child’s development, including children with disabilities. Parents want their special needs children to be able to enjoy being outside playing and exploring, but they want to make sure that their children are safe. This is where the article written by Christina Kershaw for BBQ Work can be really helpful. Ms. Kershaw lists and describes what she calls The Seven Principals of Universal Design when a parent of a child with disability thinks about their child’s safety in their backyard. The seven principles are:
- Equitable Use
- Flexibility in Use
- Simplicity and Intuitiveness
- Perceptible Information
- Tolerance for Error
- Low Physical Effort Requirements
- Appropriate Size and Space for Use
Find out why Ms. Kershaw feels that these seven principles are so very important and how they benefit a child with a disability.
THIS IS REALLY FRIGHTENING: “A recent nationwide study in Denmark of individuals aged over 10 years with autism spectrum disorder (ASD), has reported that the rate of suicide is three times higher for people with ASD as compared to the general population.” (Spectrum News) According to the U.S. Centers for Disease Control and Prevention, among all 10- to 34-year-olds, suicide is the second most common form of death. But people on the Autism Spectrum are even more likely to either attempt or succeed committing suicide. The researchers used the Ask Suicide Screening Questions (ASQ) questionnaire to determine what child (ages 8 to 18) was most at risk for suicide.
Traveling with young children is always an issue whether or not you travel inside the United States or in another country. But there is a useful guide, A Practical Guide for Traveling Abroad with Babies and Young Children, that can help your planning. Topics covered are 1) your first trip as a family; 2) Looking after babies and young children on holiday; 3) practical tips for booking a family holiday; and 4) useful links and resources.
Are you looking for the perfect gift for your Autistic child? Autism Magazine is here to help. “Autism Parenting Magazine Limited have launched their new gift-giving guide displaying choices for autistic youngsters and teens. Whether the loved one is a toddler or a teenager, the guide includes options which are perfect as gifts to stimulate the senses, and train the mind and body.” (Autism Magazine Publishes Toy And Gift Giving Guide For Autistic Children This Christmas). Since many on the Spectrum have sensory difficulties, the magazine suggestions specifically include toys for sensory Issues. What’s more, the gift-giving guide and the guide for toys for sensory Issues can be downloaded for FREE.
Researchers at the Autism Research Institute found that sleep disorders are quite common among children who eventually are diagnosed with ASD. The researchers analyzed the brains of infants through MRIs and discovered that those who had abnormal hippocampal development were prime candidates for ASD due to the hippocampus’ critical role in sleep-related memory processes.
What Is the Hippocampus?
Our brain has a hippocampus on both sides of our brain. According to verywellmind, “The hippocampus is a small, curved formation in the brain that plays an important role in the limbic system. The hippocampus is involved in the formation of new memories and is also associated with learning and emotions.” In other words, the hippocampus has a critical role in forming memories and organizing and storing new ones. In fact, it has been found that in Alzheimer’s disease and other forms of dementia, the hippocampus is one of the first regions of the brain to suffer damage, exhibited by short-term memory loss and disorientation. It also connects us to emotions and sensations attached to those memories
The hippocampus has subregions that control various memory-related brain functions: spatial memory, memory consolidation, and memory transfer.
Autism has an unusual effect on memory: It disrupts the recall of everyday events but often goes with an enhanced ability to hold onto facts. Many people with autism can master enormous amounts of detail about a chosen interest, be it the London transit system or the life of Georgia O’Keeffe….
These traits, among others, implicate the brain’s main memory hub, the hippocampus, in the condition. Preliminary studies in animals suggest that disruptions to the hippocampus and its circuits could underlie some of the cognitive difficulties common among people with autism….
“We’re recognizing that the hippocampus is really critical to a lot of the things that are clearly absent in autism — things like being able to flexibly make decisions based on past experiences,” says Loren Frank, professor of physiology at the University of California, San Francisco. (https://www.spectrumnews.org/news/memory-hub-underlie-social-cognitive-quirks-autism/)
Here’s how pediatricians screen for autism spectrum disorder in kids (Omaha World Herald) – It is difficult to diagnose autism in a young child. So, it is important for parents to know what signs to look for. Doctors use various tools to determine if a child is autistic such as,
- Ages and stages questionnaire
- Pervasive development disorders screening test
- Communication and symbolic behavior
- Modified checklist for autism in toddlers
All these and more are discussed in detail in this article by Boys Town Pediatrics.
How to Create the Ultimate Playroom for a Child with Autism (homeadvisor) – The following are discussed in this article:
- Playroom placement
At the end of the article, you will also find related resources.
How to Travel Stress-Free When Your Child has Autism (HARKLA) – This article has many suggestions about how best to travel with a child on the Autism Spectrum.
- A quiz for parents to measure their child’s “calm and focus score”
- Advice about taking a car trip
- How to take a successful trip when flying
- Best places to go with autistic kids
- Find the best places to go to
- Find the best time to go on a trip
- You should plan ahead
Financial Help for Single Mothers (financialassistanceforsinglemothers.com) – Normally, we do not post information on this page geared towards the general public. However, we feel that even autistic children could have single mothers. Thus the information contained on this Website could especially be helpful for single parents of autistic children.
Potty Training For Autism – The Ultimate Guide (Autism Parenting Magazine) – This is a very informative article regarding potty training and autism. Training a child to go to the potty is challenging whether or not your child is on the Autism Spectrum. But it is especially so for parents of autistic children. There are many reasons addressed in this article as to why children on the Spectrum are resistant to potty training:
- The child has an excessive interest in repeated flushing or fear of flushing the toilet
- The child does not want to sit and relax long enough in the potty chair or toilet
- The child only wants to play in the water or with the toilet paper
- The child does not want to clean up or does not like to touch dirty things
Amy KD Tobik, the author of the article and Editor-in-Chief of Autism Parenting Magazine provides a free downloadable guide to potty training autistic children. She also talks about the signs you should be aware of that your autistic child is ready to be toilet-trained, how to prepare for a successful potty-training process, and ideas about how to make toilet-training a positive experience for your autistic child.
Comprehensive Resources for Parents with Special Needs Children (Family Life Share) – Are you a parent who has a child with special needs? Mike Zhang, founder of Family Life Share, wants to help. The page is jam-packed with all sorts of useful information including (but not limited to) listing of different types of disabilities, some advice for parents, a clear definition of special needs and a list of ten major resources for parents to use. He is a person who not only “talks the talk but walks the walk.”
Growing up as a sibling to a special needs child myself, and then becoming a parent to a child with special needs (though different ones), I can say that the experiences you gain through being the sibling or parent of a special needs child can be daunting and also enlightening. No other experience can relate to how different your life may be, and yet providing love and support to a special needs child has the opportunity to change you – and also the way you interact in the world – in the most positive and meaningful ways.
“We are following up on this study to try to understand what makes parents reluctant,” [Ousseny] Zerbo said. “The study does not tell us why we are seeing this disparity.”
However, it is quite possible that some parents may still believe the now-debunked theory that autism is caused by vaccines.
Autism Waiver Services (Mass.gov) – ATTENTION PARENTS OF CHILDREN WITH AUTISM!!! – The Autism Division of the Massachusetts Department of Developmental Services (DDS) is running an Autism Waiver Program that provides one-on-one interventions to help children with autism under the age of 9 who exhibit severe behavior, social, and/or communication problems in the child’s home (or other natural settings) under the supervision of trained clinical staff and is available for a total of three years. Open registration is from October 17th, 2017 to October 31st, 2017.
Creating a Home Where Your Child Can Thrive with a Disability (HomeCity Real Estate) – HomeCity is a real estate company in the Austin, TX area that cares not only about selling homes but also about children with disabilities. This interesting article addresses the issue of how to provide a comfortable home for children with various disabilities. Additionally, it has various recommendations about financing and related issues and provides a link to resources for parents of disabled children in Texas.
Below are two related articles from Dave Angel, founder and organizer of the Parenting Aspergers Community, dealing with our Aspie children’s short- and long-term financial security:
Financial Help for Our Kids (aspergerworks.org) – In this article, Dave discusses how we go about getting financial help for our child (children) with Asperger’s in the future when he/she graduates or ages out of high school and we are no longer around to help him/her.
Estate Planning (aspergerworks.org) – In this article, Dave addresses the issue of planning for a secure future for our Aspergian child (or children) through estate planning.
It is our hope that these two articles will help prepare parents for the inevitable – our inability to care for our children because of illness or infirmity and death.
Grants for single mothers (singlemothersgrants.org) – In every demographic in the United States, there are thousands of people who have difficulty making ends meet. Although this Website was designed with single mothers in mind, families and individuals in the Asperger community definitely could benefit from the information disseminated here.
AUTCRAFT (autcraft.com) – Stuart Duncan, known in the game of Autcraft as AutismFather, has a child with autism and he himself is also on the Spectrum. He “created Autcraft in response to the many parents on social media reaching out to other parents because their children were being bullied on public servers. I wanted to give them just one server where that would never happen.”
Autcraft is a whitelisted Minecraft server for children (and adults) that have autism and their families.
What this means is that if you or a family member has autism and you own the computer version of Minecraft, you can register and apply to be put on the whitelist and play with other people just like you. . . .Some features of Autcraft:
- Bullying, killing, stealing, griefing, etc is not tolerated
- Swearing is not tolerated
- In game ticket/support system. Need an admin to do something, stand where you need the help and use /modreq <message>
- Players builds are protected using WorldGuard. Ask an admin for protection
- All kills, blocks placed, blocks broken, items dropped, picked up and more are tracked so that we can see exactly what happens anywhere
- A few mini-games including hide and seek, mob arena, spleef and more
- Community Wither fights and other events
So, if your child and/or you like to play MINECRAFT, this is a safe place to participate in the game and to socialize with others on the Autism Spectrum.
The subtle brilliance of Sesame Street’s first episode starring an autistic Muppet (VOX.com) – There is a new kid in town on Sesame Street (seen both on PBS and HBO) and her name is Julia. Julia is autistic. The “subtle brilliance” of all of the episodes that have Julia in it is that the crew at Sesame Street targets neurotypical (aka “normal”) kids in the way Julia is presented. They teach children that if you interact with an autistic child on his/her terms, everyone benefits. Julia is not sick, a person to be pitied or shunned. Julia is not weird or scary. Julia is just different, as Abby, the fairy Muppet, points out in the first episode.
Parenting Aspergers Community (parentingaspergerscommunity) – The opening remarks on the Home page says it all:
Discover the ULTIMATE collection of Parenting help and Aspergers advice that you are ever likely to need. Whatever parenting tips, tricks and techniques that you want for helping your child with Aspergers it’s all here for you to access now. That’s what our worldwide membership base is doing and it’s helping them to understand their child with Aspergers better, become even better parents, and make their home & family life a better place to be. And to be honest wouldn’t you like that too?
I have found the information on this site, the accompanying Facebook group, and regular e-mails from Dave Angel, the author of the Website, insightful, reassuring, helpful, and so much more. Whether your child is still a child, a teenager, or an adult, you will find the information here very useful. And, should you decide to join the Facebook group, you will be introduced to an incredibly supportive group of caring people from all over the world!
Travel Tips for Children With Autism (Parents.com) – Let’s face it. Traveling with kids is no picknick. And if you have a child with autism, going on vacation or any place outside of your home area can be even more daunting. However, according to this article, if you plan ahead, you may be able to avert some or most difficulties. First of all, you need to decide what is the best destination for your child. You should make arrangements ahead of time. “Contact airlines, hotels, restaurants, and amusement parks and explain that you are traveling with a child who has autism; discuss your needs and request certain accommodations.” It is imperative that you Get your child a medical bracelet or necklace with contact information. If your child has sensory issues, “you can order ID tags that can be attached to shoelaces or even zipper pulls.” Make sure your child has everything he or she needs. Include items that will keep your child occupied and busy. But the best suggestion is to prepare your child by practicing what to expect at a vacation destination.
Exploring Hobbies with Your Child (Autism Community) – The hobbies of children with autism might be a key to helping them cope with the world around them by identifying hidden talents, allowing them to be creative, having them develop their imagination, building social skills, and communication according to the author (Stephanie Ekis, MS, CCC-SLP). In her post, Ms. Ekis lists different types of activities that you might want to involve your children in.
Shopping for a child on the Spectrum – If you are a parent of a child with Asperger’s or Autism, you may be at a loss as to what toys you, your relatives, and/or friends should give to your child for his or her birthday and other major holidays.
Here are two links that you might find helpful.
- Amazon.com – offers suggestions for toys for Autistic children. And if you purchase toys from them through Amazon Smile (toys for autistics), you can help Asperger Works at the same time.
- Toys “R” Us – offers a list of sensory toys that are appropriate for children with Autism and other disabilities. In the UK, they also offer “quiet shopping hour” for children on the Spectrum.