”I know of nobody who is purely autistic or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”-
I recently visited someone and noticed him watching a video on his phone. I asked what he was doing and he said he was just watching a video of a moving train. I was puzzled and asked why. He answered, "it helps take my mind off of things...when I have a lot of stressful things going on I do this and it relaxes me..."
Ahh I said in my mind...It's his coping mechanism. This person is not autistic but the conversation got me thinking about autism, how autistics cope, how neuro-typicals cope and how similar they both are.
Do you know what stimming is? Have you heard that word before? The word stim is short for self-stimulatory behavior and is included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as part of the diagnostic criteria for autism spectrum disorders - “Stereotyped or repetitive speech, motor movements, or use of objects…"which "...limit and impair everyday functioning.”
What Does Stimming Look Like? Here are a few examples:
Everyone stims in one way or another. Maybe not in the ways described above but we do have our various coping mechanisms- our own way of stimming. What’s your stim? You know you have one!
I twirl my curls when I'm thinking about something or when I’m anxious, some people bite their nails, or crack their knuckles.
When stimming interferes with everyday activities and prevents learning however, this is when it becomes a symptom of autism.
Autistic persons usually stim when nervous, excited or when feeling over or under stimulated.
Temple Grandin, animal behaviourist and autism spokesperson says most people stim simply because it feels good. She said dribbling sand through her fingers was a feeling that used to calm her. She has also said that stimming "may counteract an overwhelming sensory environment, or alleviate the high levels of internal anxiety...". For instance, when my son covers his ears. I now know it's because there are certain sounds that hurt his ears, like the sound of a rooster crowing. My son will not only cover his ears but refuse to exit a car if he knows there are roosters are around.
Sometimes my son will just start singing around people or while his teacher is teaching. He'll also recite lines from his favourite movies or TV shows or line up all of his toys in some sort of formation.
When my son was about two years old he'd go up to random strangers (usually a female) give them a hug and press his chin or forehead into their chest or just sit on their lap. At that age it’s kinda cute, then again not really because hello stranger danger, but can you imagine him doing that at an older age? Exactly, not cute at all!
Lately he’s been squeezing my neck - thankfully it seems this is just a mommy thing! Sometimes he’ll come over to me and squeeze my tummy and say “squishy....squishy mommy”. I don’t quite know what to make of that, but again thankfully he only does that with me.
As you can see, there are some stims that you can use, some that you can work with or work around. But there are others that are socially inappropriate. In these situations what do we do?
Should we stop the stim? Wrong question....
If you try and stop the behavior you may cause a child to withdraw or lose an awesome opportunity to engage or interact with him.
Why is my child engaging in this behavior? Now this is the right question to be asking and a great place to start.
There are many reasons why a child could be stimming. They could be over stimulated or under stimulated, in pain, overwhelmed emotionally or they may just need to self-regulate or calm down.
So What Should You Do About These Behaviors?
If it’s interfering with activities or preventing learning then you should take steps to reduce the behaviour or encourage it taking place at a more appropriate time.
If the behavior is socially inappropriate (like sitting on some random strangers lap??!!) the goal should be to figure out what’s the reason behind the behavior and find a way to make it more socially appropriate.
Sometimes the behaviour may be a symptom of an ongoing medical problem which your child may not be able to communicate.
Some types of stimming are self-harming or may cause harm to someone else. In situations like this you should definitely do what’s necessary to try and replace the stim with a more positive behaviour.
How do you do that?
Here are a few ideas:
- first and foremost, take your child to a doctor. Eliminate any possibilities of medical issues such as migraines or ear infections causing pain etc
- take your child to a behavioral therapist and occupational therapist - they’ll guide you and point you in the right direction especially if the behaviour is harmful or inappropriate
- manage the sensory and emotional environment, ensure your child is as comfortable as he needs to be. For example my son and the dreadful rooster, we stay in the car together with the windows all the way up while he plays a game on my iPad. No sense forcing him to get out of the car making the stim situation escalate. He doesn't hear the rooster crowing so there is no anxiety attack and during that whole time my son remains a very calm boy.
- exercise! Get outside and play with your child....run, jump, dance, whatever your child needs
- once he’s not hurting himself, interact with your child while he’s stimming, engage in activities without trying to stop the stim. Studies show this works and naturally reduces the stim.
- use stimming as a reward after a period of playing or work. If you make time for stimming he will feel comfortable being himself. Encouraging more interactions and reducing the total number of hours spent stimming.
- respect the stim and join the stim! If a child is spinning plates, then start spinning plates. If your child is drumming on his chest then you do the same thing.
Sounds strange but it’s been proven to work. Google Floortime Method of Therapy developed by Stanley Greenspan. In his book Engaging Autism, he says
“Some children become intrigued – they now have a partner in crime, so to speak – and we get some shared attention and relating.
..so join in the child’s activity to create a relationship, and then begin to use gestures so the child, in order to get what she wants, has to gesture purposefully back to you and maybe begin using some words…"
The overall plan being to offer your child activities that give the same sort of sensory feeling as the stimming activity but go further in developing appropriate self regulation, engagement, and interaction.”
Perfect example? My son used beat on his chest and jump on hardwood floors a lot, now he only does it sometimes because he gets to rock it all out on an actual drum set. Do you see what we did there?
So, tell me what's your stim?
"Where words fail, music speaks..."
Hans Christian Anderson
I watch him every morning at his sister’s school. Singing and drumming with his chop sticks on his little red cushion. I see the children gathering, watching and listening. I hear some of them say hi. Sometimes he gives them a nod and continues to sing and drum. Other times he stops drumming for half a second and says hi back. I hear them say he has autism amongst themselves and then say he’s a really good drummer. There’s no actual conversation, there’s just music.
MUSIC IS LANGUAGE
Music is his language. It’s how he communicates best. I say best because he does communicate in other ways, he does speak, but he’s most comfortable when he’s making music.
If you're ever in a supermarket in Jamaica and you hear or see a boy singing in the aisles or in the line, it's probably my son. He sees a room full of people and wants to say hi or make a connection but doesn't feel comfortable doing that verbally so he starts singing. Sometimes he'll sing the Jamaican anthem, sometimes Shout by Tears for Fears, other times its Amazing Grace.
It takes too much effort to speak, to make those words come out. Especially when he’s focused on his music and in the zone. I can only imagine what’s going through his mind when interrupted to answer a question...maybe it's “Why do I have to speak? Can’t you see I’m busy trying to be me?”
To me it seems as if it’s exhausting and frustrating for him, when it’s easier to just sing what he wants to say. At times like this I do what’s necessary - I sing as well, I make up a rhyme, I do a jig or jingle annnnd tada success!
BOOKS WITH RHYTHM, WORDS THAT RHYME
I remember when he was about 2.5 years old and not speaking and we didn’t know what else to do but speech therapy. The therapist gave us exercises that included singing particular songs with him and recommended various books for us to read to him. The books that resonated with him the most were the rhyming ones, the ones that had rhythm and sounded like music to his ears. Books like Green Eggs and Ham and Brown Bear, Brown Bear What Do You See? We’d read these books over and over again and sing and dance to them even. We'd pause at certain intervals and encourage him to say words at particular points. Eventually he joined in, at first with just mumbles and then with actual words and soon thereafter he was reciting the whole book.
He would recite these books throughout the day and sometimes in the middle of the night! We weren't having conversations that a typical 3 year old would have with his parents but he was FINALLY talking.
He can now say "Good morning mommy, daddy, grandma etc," and he will tell you he is "good" when asked "how are you doing?". He will tell you if he is hot, cold, thirsty or hungry and will tell me "happy face mommy" if I look sad. If his sister is crying he'll go to her and sing a song about not being sad. Or if he knows he's done something to upset any of us he will promptly start singing "I'm so, I'm so sorry" which is a little song from one of his favourite shows. Some days you’llactually hear him speaking beautiful complete sentences like this morning when he so politely asked “Valerie can you please tie my shoe laces?”
He's still not able to have the typical conversations an 11 year old would have with his parents or friends but he speaks to us when he wants to and in his own way and we're ok with that, we get it.
I’m not a musician, neither am I a music therapist but as a parent, when I see the magic that happens with music - the windows and doors it opens for my son, I have to tap into it and use it!
Music has always been his biggest motivator. We use music to help teach him new things and it works. He also does drum, piano, and voice lessons. Why? because music is everything to him.
It has built his confidence and developed physical coordination between his feet, hands, eyes and breath. Music has also helped him and continues to help him to express his feelings and emotions which is important, when verbal communication doesn't come naturally for him. So, why not use it?
“I would teach children music....for the patterns in music and all the arts are the keys to learning" - Plato
Parenting is hard - period.
Parenting an autistic child? Extremely hard. Especially if you have other children who are not autistic.
Just take a minute to think about the level of emotions. Think how stressful it is for these siblings.
If you're the sibling of someone with autism, you know how it is. You experience the same things your parents experience. Every day is different and crazy and you never know what to expect. It's stressful, beautiful and chaotic all.at.the.same.time.
My daughter gets emotional at times. She knows that we love her just as much as her brother but she still spirals emotionally when she compares our interactions with her and our interactions with her brother. The fact is, autism parents spend a lot more time with their autistic child, and that's really not fair.
The feelings toward their sibling varies at any given time of the day swinging from love to dislike depending on what is happening.
For instance, they could be feeling like this:
"Why do you spend more time with him? Why do you pay more attention to him? He never gets in trouble! Do you like him more than me? Why does he get to use the iPad more than I do? It's not fair, I want to be autistic too! If I was Autistic you'd love me more..."
Why are those children staring at him? Are they laughing at him? They're staring! Leave my brother alone! He's autistic...he's the best brother one could ever have!
and then this:
Please no singing out loud now...
Leave me alone...
I just want some space...
It’s stressful, overwhelming and a lot to process, especially if they’re younger.
Recently, my daughter came to me crying about it all. She shared her heart and asked "What about me mommy?" She asked me to look at it from her point of view. To consider when was the last time I celebrated her in the way I celebrated the "little" things her brother does. She said, "Mommy, he gets a 'party' when he eats a banana, I eat my FRUITS everyday and no party. I'm not asking for a party mommy, just equality."
My heart broke, but I sucked it up...this was not the time for guilt! I put my autism mommy panties on, validated her feelings and had a frank discussion on how we were going to fix this.
We agreed that
- for the most part autism siblings adjust well, and are more compassionate, independent and easy going;
- over time, if left unchecked, Autism siblings could feel jealous, resentful, discouraged or angry;
- most Autism siblings feel protective of their sibling but embarrassed at the same time, and then feel guilty for feeling that. I know...complex right?
- ALL children need to feel loved and need their parents attention;
- Autism parents or any other special needs parents need to be extra careful to balance things out.
So we came up with a List to help/remind us to balance things out and decided to share it with you. Use it or share it with someone you think would benefit from it.
1. If you haven't already done so, it may be a good time to explain autism to your typically developing child - this will help them to understand and build compassion.
2. Make time for them. Special times that have nothing to do with your child who has autism. You could set aside regular daily times for them, like reading a story at bed time or 10 minutes each day when you tell them a few positive things you noticed they did that day. You could also take them out without their sibling, go to the movies or for frozen yogurt. Whatever they like, just make it special!
3. Encourage siblings to be closer and play more together. Look for ways that they can play, and have fun together. My son loves music, dancing and singing. So we encouraged them to play the Just Dance WII game together and we've noticed how much they've bonded over it.
4.Try to keep things balanced and fair. This is hard but it's important for your children to feel they're being treated fairly and equally. Make family rules that are fair for all. If one child is allowed to do something more than the other, that's not fair. Same rules should apply, if possible.
5. Validate and Manage Negative Feelings. We don't want our children feeling sad, anxious, resentful or hurt. Be aware of their feelings and validate them. Non-judgmental Communication is important so share your feelings too and let them know it's normal to feel the way they do.
6. Encourage friendships outside the family. This will help your children feel they’re more than just an autism sibling.
This is not an exhaustive list. I’m sure as time passes and situations change we’ll think of more things to add or change a few things but for now it’s a start to a happier and more balanced way of living for Autism siblings.
What If I Could Travel Back In Time?
If I could time travel I'd go back to the time when I was terrified of receiving an autism diagnosis for my son.
I'd go back and say hey hun it's me...yes it's you...you, me us...I time travelled and here we are.
I know, it's a lot to take in. Breathe, relax...I'm here for you. I'm here to tell you good things...so listen up!
You're a mother of two amazingly talented children. A boy - who you refer to as your drummer boy, and a girl you lovingly call your "noodle". They're both kind, loving and wonderful children who are happy and do silly things just to make you laugh. Everywhere they go they make friends and leave an impression. I know it's hard to imagine right now but you'll soon see. People comment about their intelligence and immense talent on numerous occasions but mostly they are in awe of their kindness and how big their heart is.
This kind of thing makes you happy. It makes you feel good as a parent and you hold on to this because it's your anchor when you're feeling low.
I know right now you're waiting to see your son's developmental paediatrician and possibly hear a diagnosis for your 3 year old son.
I know what the doctor is going to say, what the diagnosis will be. But before we get to that, before the doctor gives you the news that will change your life, family outlook and dynamic, here's some advice from Future You:
Go ahead CRY
It's called grief. You will be in mourning, no doubt. Mourning the loss of all the dreams you had for your child. Kick and scream, throw a tantrum if you have to! This is inevitable and absolutely OK. Don't let anyone tell you otherwise. Being angry and grieving is nothing to be ashamed of and you shouldn't try and hide it either. You're going to cry in your car, in the shower, on the phone while talking to your husband or other family members. You're going to cry at night when your husband thinks you're sleeping. Trust me, it's ok. Give yourself a day or two to just let it all out. BUT don't let yourself get so consumed with your grief that you miss out on the beauty and blessings you will discover around you and in your children.
Find Your Tribe
Find other mommies going through a similar situation. Joining an autism association or resource centre will help you with this and you'll get lots of information there. These mommies will support you and they will absolutely understand your son and his quirks and make you feel completely at home. It will be a little bit harder with family and friends, they mean well at times but sometimes may not be as supportive or positive because they don't understand. Be patient with them, teach them and guide them as you go along - your children will do the rest.
You're Not Going To Be Perfect
In fact you will make numerous mistakes and that's OK. It will be frustrating but just embrace the imperfections - learn from it and then MOVE ON. No parent is perfect - it's a fact. Find comfort in knowing that no parent is getting it right all the time. Parenthood and parenting is complicated. The quicker you acknowledge this and own it, the quicker you will be to embrace the messy complicated and beautiful story of you and your special family.
Google is Your Friend But Can Be Your Enemy
You're going to be bombarded with what to do and what not to do. Not every therapy is for your son, so do your research and don't be afraid to ask the doctor questions. Remember You are learning and only want to get your son the therapy he needs but don't let your enthusiasm consume you. Find a balance and make sure you have time to interact with your son and get to know him.
Watch out For Comparisons
You're going to interact with typical and special needs families. You're going to see their children's growth track. Don't get caught up in what their child is doing and what yours is not doing. It will be hard at first. Your heart will break, but eventually you'll look at the big picture - focussing solely on your son's amazing personality and unique skills and qualities. Your son's growth will happen for sure, one baby step at a time, and all along the way you'll be celebrating every major and minor achievement.
Play With Your Son and Get to Know Him on His Terms
If he wants to twirl and dance all day long, do that with him. If he wants to jump up and down for 1 hour, just do it. You won't regret it and he'll love you for it. It will engage him and foster trust in him to let you in -which is what you want.
Don't think about it - Buy Him That Drum Set
He is a natural born drummer. You can't see it now, but in a couple of weeks it will be crystal clear where his passion lies. Don't doubt it, embrace it, and surround him with music. Music is everything for your son. It will not only be his lifeline but yours as well. Music and drumming will be like a window into his mind and soul and in fact you will use it to help when teaching him new things.
The doctor will be seeing you in a moment. He will tell you your son has autism and you will eventually get a developmental assessment report confirming this. The psychiatrist will throw in words like "intellectual disability", inevitable struggles and delays, and just a lifetime of him not being like his peers. Please don't be too sad or worry too much about this. Remember I said it's ok to grieve. But don't forget to stay strong. Just believe in your son and trust that everything is going to be alright.
Finally, when you leave that doctors office never forget what I told you at the beginning of this letter. Reread it as many times as you need to. Read it when you're feeling overwhelmed and bogged down with all of his therapies, read it when you're feeling sad or happy. Let it consume you and take over your mind so you carry it with you everywhere you go. Why? because no matter what, YOU are a mother of two amazingly talented children and that's the only thing that matters in your beautiful world.
Gotta run see you soon!
"The one thing I wish I could explain to people is he's not what they think he is. Words he's been branded with could never describe him. Words he’s been labeled with can never describe him. He’s not special...he’s extraordinary. To me.” Puddle Jumping -Amber I. Johnson
I read a lot of books...mostly fiction and a few self help books. Sometimes I find books with autism and family themes woven into the plot and I get excited to read them because I want to see how autism will be portrayed in each book. A while ago I came across a novella called Puddle Jumping. It’s about a boy with Asperger’s and a girl, their friendship and falling in LOVE. I’d never come across that before - I was curious. It was actually a pretty good book...very short and very sweet...with words like those quoted above that touched my heart in a very real and deep way.
My son was diagnosed as having “an autism spectrum disorder” (ASD) when he was 3 years old. We were never told if he was high functioning or low functioning, only that his symptoms were “severe”. I was numb...devastated really, and all I wanted to know was where he fell on the spectrum, whether he was high functioning or low functioning and how verbal he would be.
Several months after getting my son’s initial Autism diagnosis, a developmental assessment was done and we were advised of significant delays in relation to aspects of his development.
I remember being emotional and having to daily talk myself out of the emotional state I was in. I’d tell myself this is not where his story ends..this is not my son...he’s so much more than this.
I was experiencing grief - mourning the loss of the dreams I had for my child. A purely selfish grief, because I had all these dreams for my boy and at the time I felt in my heart that his diagnosis buried all of those dreams. Thank God I didn’t stay in that state for too long. Thankfully I clued in to my son’s talents and to what HE was dreaming about! Not my dreams...HIS dreams - music and drumming!
After I realized that it’s really not about me or my dreams but about him and his dreams and what makes him flourish and shine, I quickly let go of those initial questions. All of that stuff does not matter to me anymore.
All that matters is that he is happy, being exposed to what makes him happy, honing his drumming skills, doing what he does best.
So yes my son has ASD. If you say hi to him and he doesn’t respond - he’s not being rude, he heard you, he’s just processing - it’s an ASD trait.
If you see him drumming on something or on his tummy, singing songs over and over again, dancing or saying lines from his favorite TV show...he’s just “stimming” - another ASD trait .
Accept him for who he is but know that who he is is so MUCH MORE than Autism and its traits.
Look BEYOND the LABEL, scratch the surface and see HIM beyond that Autism label. Take the time to really get to know him and you’ll find that he’s a person just like you and I. He has an amazing memory and is a talented drummer, whose love for music is limitless.
If we could all just look BEYOND the LABELS and see the person instead...life would be so much better. Right?