Happy Independence Day to our readers in the United States of America! I am very thankful to be an American and grateful for the freedoms I have enjoyed throughout my life thanks to the sacrifices of all those who fought for our independence (so long ago) and those who have fought to maintain it since that time. I don’t take freedom or independence for granted.
Like so many families raising a child with an Autism Spectrum Disorder (ASD), I frequently wonder what the future will hold for Ethan in terms of independence…and when I stop to ponder, I wonder about the future – not just for Ethan, but other children of Ethan’s generation, especially those affected by ASD.
On this journey, I’ve come to meet so many families working day-and-night just to help their child with ASD gain independence in areas families with typical children may never even give a second thought to…
For all families raising children with ASD, today I’m sending prayers and wishes for the children’s independence this Independence Day specifically concerning:
Pointing, Eye Contact, Empathy & Reciprocation, Speech & Communication, Sleeping, Eating, Pooping, Toileting, Wandering, Playing, Reading, Writing, Making Friends, Bonding with Family Members, Feeling Accepted, Finding a Meaningful Career and eventually Living Independently in Society…these things especially come to mind when I ponder “What IS Autism?” and how does it affect independence?
But as I write that, I worry that the majority of our society doesn’t know…
Regarding Pointing - Many kids diagnosed with ASD either never pointed as babies (to people/objects) as a means of interaction/communication or stopped pointing (and regressed developmentally). This is one of the first signs or “red flags” of ASD.
Regarding Eye Contact - Most children with ASD have difficulty with eye contact for sustained periods of time; some from birth, some after a regression. Some children avoid it altogether with everyone, including family members. Other children may have limited eye contact with very close family members, but little to none with others.
Regarding Empathy & Reciprocation - Some parents never hear the words “I love you” from their child with ASD and many of our children struggle with Empathy; some throughout their lifetimes. A great majority of children learn to reciprocate shows of affection and empathy, but often due to the patient work on the part of the child’s parents.
Regarding Speech & Communication – Increasing numbers of teens and young adults with ASD who were non-verbal are finding new ways to communicate and are telling their loved ones, doctors, teachers and therapists that as small toddlers and children, they understood most everything but couldn’t effectively reply or communicate their thoughts and emotions. Other adults with Asperger’s Syndrome, an ASD, who developed speech at an appropriate age and were able to communicate their needs and wants, are sharing their recollections of not fully understanding body language, facial expressions, idioms and other aspects of “communication” that typically come naturally to the rest of society. Some children with ASD make it to adulthood never speaking a single word; others gain limited speech through intensive one-on-one therapy. And others gain very functional speech, but do so again, through very intense therapies and interventions on the part of the families, teachers and therapists.
Regarding Sleeping – A surprising number of children with ASD have difficulty sleeping through the night; which means that family members (especially parents, but also siblings at times, too) are also awake for portions or entire nights. Living sleep-deprived is challenging and difficult, but is a stark reality for many families with ASD.
Regarding Eating – Children with ASD can have difficulty with foods/eating for a variety of reasons. A large number of children have food allergies and intolerances requiring a special and individualized diet. Other children with ASD may also have Sensory Processing Disorder (SPD) which can cause big issues with various textures and tastes in foods, requiring therapeutic interventions. (SPD is also a factor for the other senses, too, which makes independence very difficult in many situations.) Additionally, some children may have other oral/motor issues which makes it very difficult for them to chew and swallow and keeps them from eating foods that are otherwise considered a healthy part of children’s diets.
Regarding Pooping – Typical families probably don’t understand what a BIG role poop plays in the lives of families with ASD. Children with digestive issues due to food allergies and intolerances may have severe issues with diarrhea or constipation. Other families may have children who smear feces on walls and other surfaces. Other children with ASD may have great difficulty with passing BM’s into the toilet…even as teenagers or young adults, which leads us to my next Independence Wish…
Regarding Toileting – As I mentioned above, some children (and teens and even young adults) with ASD have tremendous difficulty with learning to use the toilet. Some individuals’ muscle tone is such that it is difficult or impossible for them to “feel” when it is time to use the toilet; others have sensory issues with the sound/feel of the porcelain toilet itself. And, I’m sure there are many other reasons (too many to note here) why toileting is such a tremendously challenging issue for so many families living with ASD – but it can be and often is beyond difficult for these families!
Regarding Wandering – While individuals with ASD are traditionally assigned the same “life expectancy” of their typical peers, these children are much more prone to wandering and to encountering dangerous, life-threatening situations. Because of this, many children with ASD die when they wander from safety to explore fascinating things like ponds & lakes, cars, planes, trains, etc.
Regarding Playing – Most children, adolescents, teens and even adults with ASD find it very difficult to “play” and/or interact with typical peers. Reading the social cues and intuitively understanding “unspoken rules” make some of the games kids play on the playground or at the neighborhood park extremely frustrating, upsetting and challenging. This can lead them to isolate themselves or to act out, (sometimes physically by pushing/hitting/kicking/spitting), which further sets them apart from peers and making them seem “mean,” “different,” “odd,” or “weird.”
Regarding Reading – Even some children with ASD who can “decode” words like nobody’s business often have great difficulty with reading comprehension. They may require private, one-on-one tutoring to help them gain the necessary skills to read comprehensively as their peers do. Since most kids with ASD have significant speech delays which have likely been addressed prior to learning to read, this often comes as the next language/literacy hurdle in young childhood.
Regarding Writing – Often children with ASD struggle with fine motor skills and find handwriting cumbersome, or even painful, due to poor hand/wrist muscle strength. While Occupational Therapy (OT) can help to address this, sometimes it is still difficult for students to physically write letters and words to form sentences and paragraphs. Other students may have difficulty with expressive language and find it highly difficult to “find the words” to express themselves as well as their peers do (again, most children with ASD have moderate to profound speech and language delays which must be overcome, either before or during the time when children are taught to write).
Regarding Making Friends – When it comes to making friends, even neurotypical kids often have difficulties. Add in tremendous challenges with communication, sensory overload, missing/misunderstanding/misreading social cues, facial expressions and body language, making friends isn’t the only problem – keeping friends also becomes an issue. Kids, adolescents and teens with ASD tend to suffer significantly from low self-esteem; especially when they “know” they are different and may not fully understand why or how to find friends who will be more understanding and/or have similar interests.
Regarding Bonding with Family Members – Though it is often parents who struggle most with this, siblings and grandparents (and some close extended family members) may also have difficulty bonding with a child who doesn’t readily accept or show affection in traditional ways (and may even resist hugs/kisses), and/or children who don’t respond in kind to phrases of endearment like: “I love you.” Many people in the community, even extended family members like aunts, uncles and cousins incorrectly think that the child is cold or ill-mannered if/when they do not show affection in traditional and expected ways; this is far from the truth. Each child has his/her own preferences and limits and should be respected, valued and validated.
Regarding Feeling Accepted – While some individuals with ASD have significant cognitive impairments, many do not and are considered to have typical intelligence – they just struggle greatly with communication. Some individuals, especially those with Asperger’s Syndrome may even have above average intelligence. These individuals, with average or above average intelligence, can sense that they are different and that some people are critical of their atypical behaviors and tendencies – they just may not understand how to change or “fix” it. This can be extremely hard for children, adolescents, teens and even young adults. Sadly, these individuals are at a high risk for being bullied and later committing suicide.
Regarding Finding a Meaningful Career – With a strong support system, many individuals with Asperger’s Syndrome or High Functioning Autism (HFA) find that as they grow older, they are drawn to other people who “get” their differences. And, if they can find a suitable career surrounded by like-minded people, they may feel they have found their “place in the world.” Sometimes a thoughtful mentor or a special program may be the best way to set students and young adults up for success. But it is also important to note that even individuals who may not be highly verbal or “high-functioning” need help to find independence through a rewarding career; individuals forced to do something 24/7 they find boring or miserable will not be happy, will not thrive and as a result, difficult/challenging behaviors will likely arise.
Regarding Living Independently in Society – At present, the living/working options for adults with ASD are beyond disappointing. There are very few programs and/or institutions which are helping families adequately prepare and facilitate transitions to an independent lifestyle. With more and more students with ASD every year aging out of public school services, this is a BIG concern and one that keeps many a parent awake at night. While each of us dreamed of our children heading off to college at age 18 or 19…some parents now worry that their child may still be unable to communicate basic wants and needs, or even use the toilet, at that age – thanks to the many challenges facing them – in the name of “Autism.”
While I’ve covered a lot of the aspects families raising children with ASD may think about when they consider true Independence, I’ve by no means covered them all…our children and families are all vastly different and varied, so addressing all of the concerns and worries related to ASD and independence would be impossible. This is just an overview of the main issues that come to my mind when I stop to consider an independent future for Ethan and the growing number of children like him with a range of Autism Spectrum Disorders.
Further, especially on this historical day, my dream of “Independence for All” may look very different than that of the typical American; but I hope that more “typical Americans” will stop to consider how very many families are struggling with these worries, concerns and challenges. In fact, if you wish that more people (friends, neighbors, clergy members, etc.) understood more of the worries/concerns regarding Independence our families face…maybe you need to help them understand! Forward this post to them and ask them to spend some time reading; or better yet, write about your own dreams and fears to share so that they can better understand you, your child and your family!
It will take all of us working together to ensure that all individuals with ASD can enjoy an independent life, with liberty and happiness in the coming 10, 20, 30, 40 years.
Leigh Attaway Wilcox is a writer and editor for the projectLD family of companies. Leigh is Assistant Editor of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007. Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.