I'm still learning about autism on a daily basis, even though it has been close to 18 years that we've been living, learning, growing and thriving with autism.
Every autistic person's story is different. Every family's situation living with autism is also different. While there may be some similarities in our stories and some issues that resonate with us, there will be an equal amount, if not more, that are very different and far removed from what our own reality with autism is. This doesn't make any one of our stories less significant or less important.
There is one issue that causes me some concern and truth be told, one that I struggle with (but have been coming to terms with) and that is my sons need for solitude. The need for solitude, for silence, is in my opinion, an important dialogue, one that isn't spoken of too often but essential in our conversation when we talk about autism and raising awareness.
I wrote the following post on my Facebook page a few weeks ago:
"I still have a lot to learn about autism. My son is content alone at home not wanting or needing a friend to play with. This is a concern for me because I feel like he should have a friend to play with. He has lots of friends at school, but what happens at school stays at school. These two worlds cannot cross over. Regardless how I feel, I must always remember that he is happy."
I received many wonderful responses from parents relating to the same situation with their children and I also received responses from autistic people who said how important solitude is for them. One in particular noted how great it was for my son to be able to do this in the comfort of his own home and not have to hide in order to 'stim' -- engage in self-stimulatory behaviour -- to be in his quiet time, his serenity, his calm and his world.
Now that the kids are out of school, we're spending a lot of time in our pool but again, Emilio will ask me many times to leave so that he can be alone. I always respect his wishes so I do leave him alone and I watch him from inside. I'll go out periodically and ask him if he wants some company and he'll respond with "um, no I'm okay, you can go now" or "Yes, you can come back now".
I've come to understand and realize how this time is so crucial to him. It's his anchor that keeps him grounded when he feels off balance. It's self-regulation. Some days he doesn't need it at all and then there are other days where he seeks his solitude continuously.
When is too much solitude too much? I don't know, really. I still try to interrupt him at times when I believe that he's been alone for too long. It breaks my heart to see him alone so I try coaxing him to play with me. He'll sometimes get upset and ask me to not interrupt him when he's talking to himself. Other times he willing comes and engages with me in a game or watch a movie.
I would think this need will be with my son forever. Maybe it will subside over the years, maybe not, but my greatest resource is listening to autistic people that tell me how as adults they still seek their quiet time, their solitude. Who is to say that this is wrong? I can't.
As a child many people criticized my son's behaviour as well as my parenting skills because I allowed him to stim quietly in his corner. People would be with us for a short period of time and they would assume that he stimmed all day long and that I allowed him to stim all day, without interruption or redirection towards something else more stimulating and appropriate. Of course that wasn't the case but that's what people thought of us.
The assumptions of others have always been and continue to be to this day, our worst enemy, especially for my son. Assumptions are always the prelude to judgments; judgments that are always made without knowing his story, his achievements and more importantly, his thoughts.
I shall leave you with one of my favourite quotes:
"Let's stop 'tolerating' or 'accepting' difference, as if we're so much better for not being different in the first place. Instead, let's celebrate difference, because in this world it takes a lot of guts to be different. -- Kate Bornstein
ALSO ON HUFFPOST:
According to the most recent Centers for Disease Control and Prevention estimates, 1 in 68 children in the United States has an autism spectrum disorder, based on health and education records. That figure represents a significant increase from previous prevalence estimates, released in 2012, which estimated that 1 in 88 have an ASD.
Autism is roughly five times more common in boys than girls, according to CDC estimates. One in 42 boys have been identified with autism, compared to 1 in 189 girls. Children born to older parents are also more likely to have an ASD.
According to the NIH, early indicators include: No babbling or pointing by age 1, no single words by 16 months, poor eye contact, little to no smiling or other social responses and more. (Click here for more information from NIH.) The CDC says, "Health care providers will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior. Some screening instruments rely solely on parent observations, while others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of an ASD, a more comprehensive evaluation is usually indicated.”
According to the Child Mind Institute both genetic and environmental factors could contribute.
Autism is treated with therapy, education plans and medication. Doctors and scientists say that early identification and intervention for children with an ASD can help them thrive in academically and socially in the future. There are still studies being done to find better treatments and perhaps one day, even a cure. A paper in Cell, a scientific journal, discussed a study with more insight into what could cure autism. The study found that feeding rats with similar symptoms to autism a gut bacteria called B. fragilis lead to an improvement in their behavior. "They became less anxious, communicated more with other mice, and showed less repetitive behavior,” according to the Atlantic.
Even when multiple vaccines are given to a child on the same day, they are still not at risk of developing autism.
Studies have also shown that if a child with an ASD has an identical twin, the other will be affected anywhere from 36-95 percent of the time.
There is an 83% chance of co-occurrence for developmental disorders and a 10% chance for psychiatric disorders. These disorders include Bipolar Disorder, Fragile X syndrome and Down syndrome according to the CDC.
Children whose language skills regress before they turn 3 have been found to have a higher risk of developing epilepsy.
The CDC recommends children be screened when the are 9, 18 and 24-30 months.
LOOK: This Is What Autism Looks Like Study Shows Big Leap In Autism Prevalence Autism Is Not a Parenting Fail
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