This is Day 20 of the Ali Family #AutismTruths – April 20, 2017
Dear Parents, Muslim and Otherwise
I thought I’d direct this letter to Muslim parents of kids with autism. But really, it applies to all parents of autistic kids. I’m particularly concerned with Muslim parents of children with autism and other disabilities because as a network of communities, we are historically reticent from discussing matters of health and sexuality in a public setting, let alone openly and honestly with our own children.
Yeah – this is the puberty letter.
This is hard for me to write. When I started sharing D’s and our family’s autism living, two subjects I decided that would be verboten would be my marriage and puberty. Regarding puberty – there is no way I’d ever disclose details of how it has been for D and its effect on all of us. Nope. Even when autism parents private message me to ask questions, I simply cannot divulge personal details.
However, I think there is a way to talk about this without getting into his and our private matters.
Becoming freer with discussing various aspects of puberty, sexual health and protection from sexual predators was hard enough for me within the scope of my parenting and personal life. My upbringing had me with one foot squarely in American life – public school, friends, swimming lessons at the YMCA, watching my brothers play little league, and one foot squarely in our Muslim-Desi life – fasting in Ramadan while sitting out of gym class, five daily prayers, no dating or school dances and modesty.
My husband’s childhood and upbringing is similar, albeit he grew up in the United Arab Emirates and India. All this is to say that puberty, sexual health and such matters were hardly discussed in our childhood homes. Oh, we were told the basic birds and bees and learned enough in school. But my upbringing in no way equipped me for the conversations I would have to have and situations we would need to navigate with our children.
Now, my experience in the realm of autism and puberty is with boys. So, I’ll be speaking to boys. But a lot of this doesn’t have to be gender specific.
There are a few inescapable facts here: Puberty will happen. Certain things will need to be addressed.
Get Comfortable Talking About It
You may or may not have grown up discussing matters of puberty and all it entails in your home, but there is no way you and your autistic child will get through the puberty years unless you read up, ask questions, openly discuss things and figure out boundaries.
What I’m trying to say is, you need to get over any shyness or reluctance you may have to openly discuss puberty and its various aspects with your child, your child’s teachers and with your spouse. Educate yourself. The former prudish me can’t believe I’m writing this – but you need to address and figure out how to talk to your child or teach him about what is appropriate and inappropriate when it comes to self-touching and masturbation.
Because there will be self-touching.
How you address this will depend on what kind of communication or understanding your child is capable of. Early on, before puberty even hit our household, I attended a seminar on autism, puberty and sexuality put on by my local Autism Society chapter. It was full of useful information about creating social stories, communication boards and ways to explain puberty and human development to kids on the spectrum. I’d highly recommend considering your local Autism Society or asking in your child’s school if there are any such training sessions or information sessions offered. If you need to drive a few hours to attend one, drive a few hours.
Because, this is not just about girl’s maturing and beginning to menstruate and boys maturing and exploring self-touching. This is also about how to teach our children to recognize danger and protect them from sexual predators.
One of the things I learned through the seminar I attended was that if your goal is to stop your child from self-touching, then good luck. The better option is to teach them where and when it’s appropriate. Now, I’m not an Islamic scholar and may get in trouble for saying this, but the fact is that it’s very difficult to teach kids on the autism spectrum never to engage in self touching.
So, it’s important to make it safe and private. The educator who taught the seminar I attended said encourage your child to only engage in that behavior in the safety of his bedroom. Nowhere else, not even the bathroom. This is because if he thinks it’s appropriate to do so in the bathroom, he may engage in the behavior at some point in a public bathroom – and that makes him a target.
Take the time to teach your child about strangers, respect for his own body and how no one can touch him inappropriately. Depending on how your kid learns, use social stories, visual cues, oral lessons, demonstrations, written explanations – whatever works for your kid. Don’t think you can skip this lesson because they may not get it.
Teach Appropriate Displays of Affection
Personal space and affection may also be a thing that is unfiltered for an autistic teen. Maybe he recoils from being touched or hugged. Respect that. Maybe he loves giving and receiving affection – if that’s the case, teach appropriate affection. Maybe he loves climbing into your lap for a cuddle, even if he’s 15. That’s sweet and all, but what if he tries to climb in the lap of his teacher or some random person?
What and how you teach your kid will depend on their level of understanding, communication skills and retention. It may be that you’ll have to ease off overt displays of physical affection across the board with your kid to maintain his safety in all situations. We encourage the “bro-hug” with D – a twining of his right arm with my left arm and pats on the back to show affection instead of full body hugs.
Parents often lament the puberty years in autism living, wondering where it will be over. With guys, as testosterone levels surge and change, bouts of aggression, anxiety and other things can accompany classic signs of puberty. No doubt it’s different with each kid and presents its own set of unique challenges.
But, I also give thanks, as I witness these things happening, that my child is developing as he should. He is maturing, growing and developing, as he should be. It is not easy by any means, but it’s part of life and one that should be openly addressed. So, my dear Muslim (and otherwise) parents – get over your fears and embarrassment (if this is an issue for you) and get to researching, learning, planning, teaching and talking.
If I, of all people, can take this on and help my kid navigate it, so can you.
And, because I have nowhere near comprehensively covered all the things we need to know regarding autism and puberty (shaving and managing B.O. are our latest challenges), here are some resources for you:
- Teens with ASD and Puberty – what to expect (TACA)
- Puberty and Adolescence resource guide (Autism Speaks)
- Puberty and Children on the Autism Spectrum – Living with Autism (Autism Society)
- Ten Tips to Support Children with Autism Through Puberty and Adolescence
You can do this.