Last week, I had the honour of representing World Moms Network at the Geneva Centre for Autism 2016 Symposium, held in Toronto. Over the course of three days, I reconnected with friends in the autism community and made some new ones, I saw an act by an autistic stand-up comic who was absolutely hilarious, and I learned a lot of things that gave me insights into my own autistic son.
In due course, I will be sharing some of this information with the World Moms community. For now, I offer you ten insights from the presenters:
1. Mental health in people with autism is largely overlooked: autistic youth are almost four times more likely to experience emotional problems than their neurotypical peers, and many of these problems are undiagnosed and under-treated.
2. Our ability to make social connections depends in part on genetics and hormones. About two hundred chromosomes are related to our ability to make social connections.
3. Language is not about words. It is about seeking social connections. People with autism need to acquire language, but more importantly, they need to develop the social motivation to use it.
4. Kids with differences like autism tend to process social stimuli in non-social areas of the brain. As a result, interactions with autistic people can seem somewhat clinical.
5. People with autism should be allowed to make eye contact on their own terms. Being forced to make eye contact can create anxiety and distract them from their efforts to communicate.
6. Just because someone is unable to speak, that doesn’t mean they have nothing to say. When interacting with someone on the spectrum, we need to look for other ways they might be communicating.
7. Don’t just tolerate the differences of autistic brains, embrace them. People with autism have very distinct neurological wiring that make them think in ways that neurotypical people cannot relate to.
8. People with autism tend to process small changes similar to how typical people process major changes, like the loss of a job or a loved one. This can make a neurotypical person’s average day like a minefield of trauma for someone with autism.
9. People with autism learn best visually. Their brains are not wired for the kind of auditory learning that is found in most regular classrooms.
10. The hidden curriculum consists of unwritten rules that are not directly taught but everyone knows. Violation of these rules can make you a social outcast. People with autism do not pick up hidden curriculum items from their environment like everybody else. They have to be taught.
Are you the parent of a child with special needs? What little snippets have you learned on your parenting journey?
This is an original post to World Moms Network by Kirsten Doyle. Photo credit to the author.
Autism boy and his brother at the hotel pool
When he was younger, my autism boy was terrified of water. Bath time was an ordeal that involved physically restraining this petrified, screaming child while we sponged him down as best we could. When we had to wash his hair, we would have to take him by surprise and wrap him up like a burrito before he would realize what was going on. These gruelling sessions usually ended with me in tears as I contemplated what I was putting my child through.
A trip to a splash pad one summer’s day a few years ago led to the discovery that although my autism boy hated being submerged in any body of water, he would consent to standing under a spray of water. From that day, our lives were a lot easier: bath time became shower time. My son was not exactly thrilled, but the screaming and terrified looks were replaced with crying and more manageable anxiety.
Although keeping my child clean is less traumatic than it once was, it is still challenging. My son only just manages to tolerate being in the shower for any length of time. Every minute that he is in there, he begs to be allowed out.
And so it was with a great deal of trepidation that I decided to enrol him in swimming lessons this summer. Fear of water or no fear of water, this kid has to learn how to swim. Individuals with autism are twice as likely as the general population to die prematurely from accidental causes. An extremely high percentage of those deaths are drownings.
And so I called the local aquatic centre and told them I wanted to put both of my boys into swimming lessons. I explained about the autism and the fear of water, and expressed my concern that my son would not even get into the pool.
The lady at the aquatic centre said something that I have told myself many times, something that I believe should be a constant mantra for autism parents everywhere.
“We won’t know what he’s capable of unless we give him the opportunity to try.”
These words told me everything I needed to know about the staff at the aquatic centre: that they were prepared to work with my special needs son in a positive and inclusive manner.
On the day of the introductory lesson, I deposited the boys with their instructor and made my way to the observation room, where I leaned forward in my chair and waited anxiously. I knew, at least, that my autism boy would be greatly reassured by the presence of his brother. As I watched, the boys were directed to sit on edge of the pool and dangle their legs in the water.
My younger son readily complied. The autism boy watched him for a few moments, and then followed suit. I held my breath, waiting for a disaster.
But instead of screaming and panicking, my son gingerly lowered himself into the water, to where his instructor was waiting.
I’m sure there was an audible thunk as my jaw hit the floor.
With his hands resting lightly on the instructor’s shoulders, my boy walked from one side of the pool to the other, and then back again. He waited patiently as the instructor went through the same paces with my younger son, and then he did it all over again.
Half an hour later, I met my kids at the entrance to the pool. Both of them were full of smiles, and my younger son could barely contain his excitement as he described how well his brother had done.
Several weeks have passed since then: during this time, we have had a family vacation that included many hours at hotel pools, and there have been two more swimming lessons. Almost overnight, my autism boy has become a water baby. He’s not exactly Michael Phelps, but he can float with support and put his face into the water.
This experience has been a valuable reminder for me to never assume that my kids will not be capable of something.
Have your kids ever surprised you with an accomplishment that you weren’t expecting? Have they ever come to love something they once feared?
This is an original post to World Moms Network by Kirsten Doyle. Photo credit to the author.
I wake up in the middle of the night needing to use the bathroom. I tiptoe past my son’s bedroom, but in spite of it being about two in the morning, he is awake.
“Mommy!” I hear him whisper.
I go in, thankful that he finally understands the importance of not talking out loud while the family is sleeping. As I tuck him in, he reaches a hand up and touches my face.
“Lie down with Mommy on the bed,” he says, in his peculiar speech pattern and his even more peculiar voice that is teetering between boy and man registers.
Knowing that he will not get to sleep again without a cuddle, I promise to be back. I quickly use the bathroom, return to my son’s room and lie down beside him. We lie there for maybe a minute before he whispers again.
“I love you, Mommy.”
“I love you too,” I reply.
“Good night. Have beautiful dreams,” he mumbles, giving me a gentle but unmistakable shove. By the time I’m walking out of his room, he is fast asleep.
As I make my way to my own bed, I think about my son, about how far he has come and how far he still needs to go. He is twelve years old now, sprinting down the home stretch toward his teenage years. Nine years ago, almost to the day, he was diagnosed with autism.
Back then, when he was almost four, the only functional words in his vocabulary were “juice” and “pee”. He needed assistance with every single aspect of his daily living – toileting, getting dressed, eating, brushing teeth. Grocery store meltdowns were common, and washing my son’s hair could reduce him to a state of terror. Haircuts were absolutely out of the question.
Today, my son talks. Not a lot – not enough to have more than the most rudimentary of conversations – but he talks. He makes requests using full sentences, complete with “please” and “thank you”. He expresses emotions and makes jokes. He can pick out his own clothes, take a shower more or less by himself and even washes his hair. He hates it, but he understands that it has to be done. He can have haircuts now, even though I am the only one who can administer them and he keeps bunching his shoulders up.
As I look at him now and try to see into the future, I have no way of knowing what he will be capable of nine years from now. On the one hand, I don’t see him being able to live independently. He still lacks many life skills and, like many people with autism, he does not have an innate sense of danger and he does not know how to keep himself safe.
On the other hand, nine years ago I would not have foreseen the progress that he has made up to this point. I would not have thought that a kid who once had two usable words would be saying things like, “Have beautiful dreams”. So who knows what another nine years will bring?
We will only find out by continuing to steer him out of his comfort zone and into unknown territory.
How do you deal with challenges faced by your child? Do you wonder what your kids’ futures look like?
This is an original post to World Moms Blog by Kirsten Doyle. Photo credit to the author.
My older son was born in 2003 and diagnosed with autism in 2007, when proponents of the vaccine/autism link were at their loudest. Since my son had displayed autism-like tendencies from birth, I never bought into this theory, and both he and his younger brother are up-to-date with their vaccines.
I find myself constantly having to defend my parenting choices where vaccinations are concerned. I get accused of not doing my research (I have), of supporting the interests of Big Pharma (I really have no feelings about Big Pharma one way or the other), and of pumping my children full of toxins (most of the ingredients in vaccines are present at higher doses in what we eat, drink and breathe).
The whole debate mystifies me a little, not only because of the overwhelming scientific evidence refuting the autism/vaccine link, but because there are those who believe that autism is such a bad thing that they are willing to force bleach enemas into their kids to “flush out the vaccines”. I hate to break it to you, but if you do that, your kid will be seriously ill, and he or she will still have autism.
A growing number of parents are basing their decisions not to vaccinate their children on myths instead of science. Some of these myths include the following:
1. Courts have confirmed the link between autism and the MMR vaccine. This myth is based on one Italian court case featuring a child who was diagnosed with autism a year after being vaccinated. The court found in favour of the child’s parents, and its ruling was based on a flawed, fraudulent report that has been discredited. And let’s face it, how much should we trust a court system that stated that a man cannot be convicted of rape if his victim was wearing jeans?
2. Vaccine shedding has resulted in more measles cases than unvaccinated kids. In one of the books in The Hitchhiker’s Guide To The Galaxy series, Douglas Adams likened the chances of something with the odds of dropping a ball bearing from a moving 747 and hitting an egg sandwich. The odds of vaccine shedding – the phenomenon of someone catching a disease from someone who has recently been given a live vaccine – are similar. There has been the one-in-a-gazillion case of the rubella portion of the MMR vaccine shedding into breast milk, and in over 55 million doses, there have been five reported cases of shedding in the Varicella chicken pox vaccine.
3. There is almost no autism in the Amish community, which does not vaccinate. Both parts of this statement are incorrect. Most Amish parents do vaccinate, and autism does exist in the Amish community, although at a lower rate than in the general population.
4. Diseases like measles and polio have been reduced not because of vaccines, but because of better living conditions. Substandard living conditions, including poor sanitation and lack of access to a safe water supply, exist in many poverty-stricken places in Africa. While some diseases, like bilharzia and cholera, spread very quickly in places like this, the incidence of measles and similar illnesses has dropped dramatically in places that have had vaccination programs.
5. People who vaccinate their kids have nothing to worry about. A common argument of those who choose not to vaccinate is, “If your kids are vaccinated, what are you so worried about?” That is true – I’m not too worried about my kids, whose shots are up to date. On the other hand, I am worried about the elderly person who lives in the same house as me. I worry about one of my loved ones, who is immune compromised because of the chemotherapy she is currently enduring. I worry about a friend’s two sons, who are transplant recipients and cannot receive vaccines. I worry about the pregnant women I know, and about the newborns who are too young to be vaccinated.
6. Measles, chicken pox and whooping cough are normal childhood illnesses. Anytime you put the words “normal” and “illness” into the same sentence, there is a problem. Illness, by its nature, is not normal. It’s a state of imbalance, of the body not functioning the way it’s supposed to. When these illnesses were common, it is true that many people got through them without serious consequences. But there were those who didn’t. There were the babies who died of pneumonia, the pregnant women who lost their babies, the kids who died of encephalitis, the people who suffered irreversible loss of sight.
7. The risk of vaccine injury means that no-one should vaccinate their kids. To play devil’s advocate for a moment, vaccine injury may exist. In a small percentage of the population, vaccines are alleged to cause serious illness and even death. But that is not the fault of the vaccine. It is simply a tragic result of the genetic makeup of some individuals. People who are at significant risk of vaccine injury have a very valid medical reason not to vaccinate – in fact, they are among the people we need to protect via herd immunity. But to say that no-one should vaccinate because of the few who are genuinely at risk is as ridiculous as saying that no-one should wear seatbelts because of the handful of people who have been harmed or killed by seatbelts in vehicle accidents.
When making the decision to vaccinate or not vaccinate, parents need to be driven more by the facts and less by emotion and media-generated fear.
Where do you stand on the vaccine debate? Do you believe that vaccines should be mandatory with an allowance for medical exemptions?
This is an original post to World Moms Blog by Kirsten Doyle (Running For Autism) of Toronto, Canada. Photo credit: PATH Global Health. This picture has a creative commons attribution license.
This week, a story in the news made me cry. It was not the kind of story that makes it big in the mainstream media. It was not about mass devastation or loss of life, war or missing jetliners. It was, however, a story that has a big impact in my little corner of the world: the autism community.
What happened was that a pair of teens persuaded a 15-year-old boy with autism to participate in the ALS Ice Bucket Challenge. They sold him on how generous it would be, how cool it would be, how fun it would be. As he stood there trustingly, expecting to be drenched in freezing cold water, the teens poured a bucket filled with human feces and urine all over him. (more…)
A few months ago, my older son George turned ten. I felt a sense of wonderment at the fact that I had actually succeeded in keeping a human being alive for an entire decade. To put this into perspective, let me just say that as a kid I ripped the limbs off my dolls. I was not exactly a poster child for parenting potential. I know more than a few people who might legitimately be surprised that I’ve been more-or-less successful as a mother.
As George blew out his birthday candles, though, I also felt a jolt of terror. These ten years have gone so quickly, and in just eight more short years, my firstborn child will be nominally (although probably not academically) ready to graduate high school.
But wait! Before that even happens, before we have to make scary decisions about adulthood and post-school life, we have to navigate the stormy teenage years – a period that I don’t think any parent looks forward to, never mind the parent of a child with autism. (more…)