20 Things This Dad Wants You to Know for Autism Awareness Month

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It’s Autism Awareness Month!

Social media is full of people lighting it up blue, posting multi-colored memes, having tattoos or taking part in fundraisers.

This is all great, I’m a big supporter. Awareness is a fantastic start, but this needs to be the first step. It’s easy to be aware of something without really understanding it, and understanding and acceptance has to be the bigger goal.

Back in 2009 I had no real idea of what autism was. I’d seen “Rain Man,” that was it. I’d never met anyone who was autistic, and I never expected it to play any part in my life. The year before, my first son Jude was born, and I was happily settling into fatherhood.

By the time Jude was 18 months old he had been diagnosed with autism. Three years later, my second son Tommy would also be diagnosed, again at 18 months old. Autism quickly became part of our everyday life. It became our normal.

To celebrate Autism Awareness Month, here are 20 things I’ve learned about autism over the last few years that I think are important. They’re all from my point of view as a parent of two children on the autism spectrum. They include what I have learned from them and what I have learned from others in the autism community on our journey.

1. Autism can affect how a person communicates with and relates to others. This might lead to them being seen as “anti-social,” which isn’t always the case. They may find it difficult to express what they need and how they feel, which can make life extremely challenging at times

2. Autism is a spectrum. While a lot of people with a diagnosis will share some common traits, autism will affect them in different ways. Everybody is different. This may make it more difficult to understand, but it’s important you do. Treat everyone with autism as you would anyone else, as individuals

3. You cannot tell a person has autism just by looking at them. Autism is what is sometimes called “invisible.” There is not a certain look. Telling someone “Oh you don’t look autistic” is not a compliment.

4. Autism can affect how a person is able to make sense of the world around them. This confusion can cause anxiety and behaviors you might feel are strange. Be patient. Try to understand.

5. Not everyone with autism has a “special” ability like Rain Man. Please don’t assume they do. When someone tells you their son has autism, don’t ask them “Ah, OK, are they really good at math?”

6. Nobody knows the cause of autism. Lot’s of people say they do. There are hundreds of theories out there, but nobody has a definitive answer. What causes autism is not the most important thing — how we accept and enhance the lives of people with autism is.

son with hat that says love

7. Hollywood and TV portrayals are not always true. What you see on TV or in films is what it is like for one person with autism. It is not always accurate (although recently I’ve found it to be much better), so try to realize everybody’s story is different.

8. Somebody having a meltdown is not the same as someone misbehaving. There is a difference. During a meltdown a person loses control of their feelings and actions. A meltdown can often lead to self-harming or self-injurious behaviors. Getting angry and frustrated with someone when they do this does not help; what they really need is compassion. Telling someone they should teach their child how to behave is probably the worst thing you can do.

9. Some people prefer to be talked of as “having autism.” Some prefer to be described as “autistic.” You should always defer to their choice of language. If in doubt call someone by their name — I’ve found this to always be the best!

10. Try to see the person for who they are. People with autism are individuals who should be treated accordingly.

11. If you’ve met one person with autism, you’ve met one person with autism. What might apply to that person you already know might be the complete opposite for somebody else.

12. Many people with autism have problems sleeping. Trust me, I know. Often it is due to a problem with the production of the sleep hormone melatonin. Bedtime routines that work for “neurotypical” children don’t always work. Sleep is so, so important for both the child and the parent; finding a way to make things better is crucial.

13. Stimming is OK. Stimming means “self-stimulation” and is used to describe behaviors that someone with autism may display at times, such as flapping, bouncing, rocking back and forth. Don’t try and force someone to stop their stims. They help to provide extra input or block out sensory input when the world is overwhelming. It can be soothing and allow a person to self-regulate and find their place in the world. It might not be behavior you think is “normal,” but it’s important for the person who is stimming. Embrace the stim.

14. Making friends can be difficult for someone who is autistic.  Different behaviors and interests can mean a child or adult with autism can easily be excluded. Be nice, be understanding. Try to teach your children to be the same. Making a friend can make such a difference.

15. Not all people with autism are able to speak. This doesn’t mean they don’t have a voice, and it certainly doesn’t mean their world is a quiet one. You should never assume incompetence due to a lack of words. They are able to listen and understand more than you know, so please talk to them too. Love needs no words. Finding a way to communicate with someone without using verbal language can be the most beautiful thing you’ll ever do.

16. Autism can mean at times the world is overwhelming to a person’s senses. Sights, sounds, touch, smells that you might feel are normal can all be too much. The processing of these senses can be very different for each person. This can trigger meltdowns when out in public places. Try and be aware, and rather than staring, see if you can help.

17. Not all therapies work for the same people. There are hundreds, if not thousands of different therapies out there for someone with autism. What works for one person, doesn’t always work for another. While a pet might calm and soothe one person, for another it might be petrifying. A gluten-free diet might work for someone, but not for somebody else. If it hasn’t sunk in yet I’ll say it again. Everybody is different.

18. Routine is often important for someone with autism. Knowing what’s coming next can relieve any anxiety they are feeling. However, the ability to be flexible is important too. Trying to find the right balance is the key.

19. Autism is nobody’s fault. It’s not due to bad parenting, something you did during pregnancy or something that happened after they were born. I would suggest to stop worrying about the cause, and focus on how you can help someone you love face with their challenges.

20. Everyone, autistic or not, wants love an acceptance.

Happy Autism Awareness Month! Now let’s work on greater acceptance and understanding.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Struggling to Find My Role After Placing My Son With Autism in Residential Care

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Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office.

There, a woman about 10 years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect. Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cellphone, I still listen to rock and roll!” I cocked a sly brow. “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me.

My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager Aaron has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers. We’ll gain freedom to enjoy more satisfying interactions and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”

daniel

It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing. It seems to be Aaron’s gentle way of telling us to back off now and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago. I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home? Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly “mine.” When his days began and ended with my voice, my touch, my assurances of a love that would last forever. I recognize that a part of me has been waiting seven years for him to come back home.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this: I know all about letting go, the wrenching loss of doing what is best for my son. And I know, too, the freedom from the demands of caring for him. I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance. It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son feels like a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home. It is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child: Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by. He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again. I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be. I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving. And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother. That woman will always be right there, behind him.

I can’t see myself any other way.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Wonder if I Should Be Doing More for My Son With Autism

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Right around the time my son Dominic was diagnosed with autism at 2 and a half years old, I became friends with a gal who had a daughter on the spectrum. The more I got to know her, the more I realized she and I had different ways of
helping our children. While she was a very nice person, she was using what I considered a “controversial” therapy on her daughter. I won’t go into specific details, but let’s just say it made me uncomfortable. Needless to say, we have lost touch with each other.

When we decided to put Dominic on Ritalin after he was diagnosed with Attention-Deficit Hyperactivity Disorder (ADHD) at age 3, it was a really, really hard decision. I remember crying. I had a lot of doubts about putting him on the medication a such a young age. But, we saw such great results shortly after; he still remains on it to this day. I know not all parents would agree with our decision, but it is our choice.

Sadly, even within the special needs community there are parents who feel the need to judge other parents on how they are raising their children or the choices they make. An encounter with another special needs mom who challenged me after I told her what we were doing for Dominic at the time is eternally etched in my mind. She told me, “That’s it? that’s all you are doing?” I was so stunned by her rudeness that I had to walk away from her.

It would be wonderful if one therapy worked for every single child with autism, wouldn’t it? That is not the case. What works for one child, might not work for another, and that can make it extremely difficult to know what is the “best” therapy to try.

Since Dominic is terrified of large animals, I know “hippotherapy,” a therapy using horses wouldn’t be a good “fit” for him. I try really, really hard to not pass judgment on what therapies other parents use for their children with special needs because I wouldn’t want someone to pass judgment on me.

From time to time, I think of my friend who has the daughter with autism. Her daughter was talking and reading well before Dominic. I think sometimes, What if I used the same therapy my friend used? Would he be further along than he is?

kathy and dominic  I guess I could spend all day feeling “guilty” for not trying a certain therapy that could help him face a challenge, but that would be counterproductive, wouldn’t it? I focus my efforts instead on what we are doing for him each day.

I love what Dominic’s private speech therapist told me at the end of one of his sessions several months ago. She said, “I have high expectations for Dominic.” We do too.

He has already surpassed many “hurdles” since his diagnoses, and I know there will be challenges ahead on this special needs road. But I know in my heart when I put my head down on my pillow to go to sleep each night, I have done the best that I can for Dominic, and that is enough.

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When the ‘Basics' Are Difficult for My Son With Autism

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My son showed me exactly how he planned to install a CPU into his computer yesterday. If you don’t know what that is, don’t worry. You are in good company.

He walked me through it step by step, explaining in painstaking detail how to install it, and how the actual device functions. The way it communicates, what one set of cords does vs. the other, why the motherboard goes in this spot, and so many more things that I did not understand.

I sat there in awe, so proud of the man he is becoming. He is realizing his strengths, and using them to compensate for the difficult aspects of his life. It is exactly what he has been working towards for almost four years now.

I also couldn’t help but feel a pang of confusion and disbelief. He can do all of this, but he may not be able to navigate dinner tonight.

It’s something I don’t think we talk about as much as we should. A child on the autism spectrum may master outrageously difficult things, such as building a computer without ever being taught how to do so. But it can be the basics that are difficult. Eating. Sleeping. Drinking water. Shopping. Taking medicines. Showering. Getting dressed. Playing. These areas of my son’s life can be the most complicated.

Eating and sleeping are basic life requirements, and yet they can be the most challenging aspects of my son’s life. “I’m hungry, but I can’t eat.” “I’m tired, but I can’t sleep.” “I want to go to the store and look at air fresheners, but I can’t be in the store.” Some days he can’t eat the first breakfast I cook because the texture bothers him, or sit at the table because his brother is tapping his feet on the floor, or handle a shower because it’s too much for him after a long day. He has learned to better communicate what is happening. I feel so grateful at how adept my son has become at communicating his needs.

Our life necessarily looks different. My son spends more time learning the basics, like eating and hygiene, than he does with subjects like science and math. And I am 100 percent OK with it.

What makes it complicated is the rest of the world not understanding, assuming he is “spoiled,” and questioning why I allow him to make his own decisions instead of demanding obedience. Doctors, other kids, and even his own brother don’t understand why he can’t just do these things.

He doesn’t have an answer. But I have an answer.

Everyone is different. Everyone has strengths and weaknesses. My son is stronger in his strengths than any 13-year-old I know. He also works harder, every single day, on the things that are tough for him. Sometimes the basics are the most difficult. Sometimes “simple,” isn’t simple. Sometimes development looks wildly different for one child versus another. And sometimes, we just have to proceed at the pace that is right for our children.

I don’t think the basics will ever be easy for my son. But I have seen enough progress to know this:

He will figure out how to best approach eating, sleeping and shopping. Until then, I will help him. I’m his mom. It’s my job, and one I feel lucky to have.

Shawna and her son, standing outside, view from the back. Her son has purple hair.
Shawna and her son.

Follow this journey on Not the Former Things.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I've Learned About Supporting My Grandson With Autism

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I pen this as an observer; I claim no expertise. I’ve never parented a child with autism spectrum disorder (ASD). I don’t go to therapy appointments, I don’t visit the neurologist or the behavioral specialist and I don’t deal with the inevitable daily challenges that a child with a neurological disorder may face.

However, I love a child with ASD. He’s my grandson.

I also don’t have Type 1 diabetes. I don’t prick my finger eight or more times each day to test blood sugar. I don’t position a spring-loaded device on my belly and push the button to insert a cannula to deliver insulin — to literally keep me alive. I’ve never woken from a diabetic coma, surrounded by paramedics and feeling rotten. I’ve never been hospitalized with diabetic ketoacidosis.

But I love a man who does, who has. He’s my hubby.

It’s been a journey. So here I am, 20 years after his diagnosis, still clumsily discovering how to be an encourager and advocate while maintaining my primary role as wife and lover. I avoid being the “diabetes police,” but I’ve said the wrong thing and responded in the worst way when he most needed compassion.

I cannot express the highs and lows (no pun intended) of dealing with diabetes. You can do the same things day in and day out and get wildly different results. Just last Saturday, the excitement of finishing a 5K was clouded within minutes when his blood sugar reading was high. There is big potential damage to vital organs from exercising with high blood glucose. But there are so many factors outside of his control, and virtually none within mine. There were many emotions that surged, from aggravation to fear, but the truth is that you just deal with the present. Adjust, course-correct where possible, and keep living life with this person I love with all of my heart. I wouldn’t want it any other way.

ASD can make everyday things hard for our boy. He has difficulty with waiting. Changes in routine are upsetting; he doesn’t like to share certain toys and he doesn’t usually show affection. Many times he’d rather play alone than with his siblings. Some days are just hard.

He’s learning and developing skills to cope through therapy and the efforts of his parents. They are his champions.

Watching him run and play outside makes my heart soar. He’s brilliant, this little guy. He loves books — he will sit with anyone who is willing to read. When he is having a good day, he is delightful. His joy is pure and wild and unfiltered. I have high hopes for this boy, confident that he will reach his potential because he is surrounded by people committed to building a strong foundation.

So here I am, clumsily discovering how to be an encourager and advocate, while maintaining my role as his grandma and my daughter’s mom. I am not an expert on ASD, and I’ve said and done the wrong thing. I’ve responded with impatience when I should have been compassionate. I’ve already made some monumental blunders with him. Without a doubt, I’ve annoyed his parents by saying the wrong thing or reacting inappropriately to his behavior. I’ve misunderstood and been misunderstood because I didn’t know enough about his challenges. We’ve learned to extend grace to him and each other.

I don’t know what our sweet little grandson’s experience will be. I’ve read lots about autism, pretty much everything I can get my hands on; I listen and ask questions of his parents. And what I’ve learned is to expect the unexpected. The things that worked yesterday (or the last time that we were together) don’t always work today. Regression can occur and expectations have to be adjusted. But at the end of every day, the little boy who lies down and sings himself to sleep is, I believe, a gift from God, fearfully and wonderfully created.

May we ever grow in compassion and joy for every life.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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5 Things I Want Everyone to Know for Autism Awareness Month

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Hi Everyone! This is Andrew Levin, Production Intern at The Mighty. In honor of Autism Awareness Month, here are 5 things I want everyone to know about autism.

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