Are you the parent, teacher or therapist of a child on the autism spectrum? If so, I’m sure that like me, the guardian/ grandparent of a high functioning teen on the spectrum, you’re always looking for answers and support.
I was privileged to conduct an interview with Temple Grandin, the foremost advocate for kids with autism. Temple is autistic herself, and is the subject of the award-winning movie Temple Grandin, starring Clare Danes.
In our talk, Temple emphasized her dedication to spreading this message:
High functioning autistic children learn differently, but they are capable of living independent, productive adult lives IF their parents and other caretakers lovingly push them to do so.
From our delightful conversation, I came away with a number of “must do’s” for parents in general, and more specifically, what I must do for my grandson, Jake:
Start working with your autistic child by age 2 or 3. If a child can’t talk by the age of 3, and you know he isn’t deaf, you need to intervene. If you cannot get an official diagnosis (my experience), it doesn’t matter, according to Temple. Temple’s mother began working with her when she was 2 ½! If you suspect autism, you must research the reason for the delayed speech and begin working with the child to develop his vocabulary and communication skills. She suggests reading the latest edition of her book The Way I See It, and Autism Breakthrough, by Raun K. Kaufman, for understanding and working with a young autistic child.
Pay attention to the child’s sensory needs. If he is unhappy with a certain type of clothing, like “scratchy” jeans, find a softer brand. If loud noises trigger an anxiety attack, bring headphones along on your outings . Last year we had to leave the circus STAT when the man was blown out of the cannon - poor planning on my part! A parent must learn to become a sensory detective. If your chi won’t eat crunchy cereal, it may be because the noise of chewing is deafening to him. If he balks at taking a shower, perhaps the feel of the spray is bothersome. If he has difficulty going to sleep, the night light may be keeping him awake.
Medication may be a must for your child. Parents are often reluctant to medicate their children for behavioral issues, but in some instances, medication alters their brain chemistry and helps them better cope with the world. Medications like antidepressants for anxiety can save your child from the frightening meltdowns that hinder their progress. Many autistic children, like Jake, also have severe ADHD and need medication to help them focus in school. The most important step is to find a doctor who is very familiar with autism and not to overmedicate the child.
Expose your child to a variety of experiences. Temple places heavy emphasis on this directive. It is the tendency of the autistic child to withdraw and want to play alone. Many parents, going on an outing, leave their child with a babysitter or relative when they know the experience will be upsetting. Temple says they must do just the opposite. She relayed the story of her mother forcing her to go into the hardware store alone to purchase supplies for a project she wanted to build. She was terrified, but she managed to do it – victory! When she was 13, her mother sent the resistant Temple to her aunt’s ranch in Arizona. She offered Temple a choice: she could stay a week, or she could spend the summer, but she had no choice about going. That experience led to Temple’s future vocation, her successful career working with cattle. Thereafter she spent many a summer there, working and learning. Temple contends that only through a variety of experiences in the world can a child find his true passion and learn how to interact with people. A year ago, we left Jake behind while we took our older grandchildren to the beach in Florida because he hates even an hour long car ride. Looking back, I think we should have given him the option of going on the road trip or flying (alone) to meet us, but we shouldn’t have left him home. He missed valuable learning experiences because we allowed him to avoid that trip.
Use your autistic teen’s passion (they all have one) to explore possible career choices. Observe what he does best and let him experiment with related activities in that field. Nurture his talent. That passion for drawing could lead to a career in architecture. Constantly taking things apart and putting them back together could result in a career as an auto mechanic. Temple asserts that Silicon Valley is full of people with mild autism and that many of the people we call “nerds” and “geeks” are on the autism spectrum, whether they are labelled or not. She bemoans the fact that so many school districts have deemphasized what used to be called vocational programs. In our case, however, we are fortunate that our school district has a career high school that caters to students pursuing a variety of careers. Our plan, since Jake is an eighth grader, is to collaborate with the school this year to help him determine the career path for which he is best suited. That way, when he graduates, he’ll be a step ahead in preparing for what he will do for a living.
Push…gently. The focus of Temple’s upcoming book, The Loving Push, co-authored by psychologist Deborah Moore, PhD, is that parents and teachers must push their children out of their comfort zone in order to succeed. A quote from the book says, “A child with autism has a brain that responds, by default, with ‘no!’” We, as parents, tend to be overprotective of our children on the spectrum because they have to struggle so hard, especially when socialization is required. According to Temple, that’s the worst thing a parent can do. It’s up to us, as parents and mentors, to move our children out of their comfort zones, though they may be pushing back all the way. Academically, an autistic kid has no problem throwing himself wholeheartedly into school subjects that interest him, but usually puts as little effort as possible into those he dislikes, usually because the concepts are difficult for him to grasp. However, he has to pass these classes to move forward. Learning begins at home. Besides academics, we must teach our children to do all the things adults must do – laundry, cleaning, shopping, paying bills, taking care of personal hygiene, holding down jobs. Temple started working when she was 13! The key is to teach in steps that your child can understand, over and over till the skill is learned.
Limit videogames to one hour per day. Period. This is good advice for all kids, but for autistic kids, it is critical. Recent studies have shown that autistic brains are especially vulnerable to gaming addiction. Their whole lives can be consumed by their gaming activity, even when they are not actually playing. This leads to depression, anxiety and isolation. Conversely, an autistic child must READ. Reading is essential to being successful in life. A talented artist cannot be an architect is he cannot read well and comprehend. Temple suggests that my grandson, who hates to read, be required at home to read and analyze a newpaper article every day.
If your child is being bullied, intervene! As parents of kids on the autism spectrum already know, the quirky behavior of a kid with autism, especially those in general education classes, can be a magnet for bullies. Talk to your child; be aware of his being targeted. If the school won’t take care of the problem, take whatever measures are necessary to remove him from situations where he is being made fun of. Temple was mercilessly bullied in high school, and her mother removed her from the school and sent her to boarding school. And further advice from me…monitor texts on his cell phone!
My last suggestion, coming from my own personal experience, is to advocate for your child and carefully check on his progress at school. I can speak from experience as an educator in saying that before we had an autistic child in our home, I often underestimated the capability of high spectrum kids. Don’t leave everything to the “experts.” If he has an IEP, monitor to see it is being followed to the letter. If it is not, go up the chain of command until something is done to correct the problem. In my case, I hired an advocate to assist the school and our family in ensuring that Jake gets the best education he is capable of obtaining. Many parents don’t have the financial resources to do that, but they can examine their child’s records anytime they wish.
It isn’t easy to live day to day with an autistic child, and it definitely is challenging to raise one to responsible adulthood. Leaving him behind while you go on vacation is certainly easier on you than taking him along, but it’s not the best choice for him. Look at it this way…work hard for 18 years, and have a young adult who can live an independent, satisfying life…or leave him to his own devices, giving in to his self-limiting autistic behavior, and have him living on disability (probably with you), isolated in his room, gaming or otherwise enslaved by technology, for the rest of his life. The choice is yours.