10 Things You Can Do for a Parent Whose Child Just Got an Autism Diagnosis

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Recently we celebrated the birthday of my youngest son Zach, who has autism. Families and friends from both sides of his genetic tree came to usher in his last year in single digits, while his almost teenaged older brother with severe autism, Justin, looked on.

All in all, the event went well, with my littlest love thrilled with his gifts and sad all the hoopla and his four parties were over.

Yes, I said four parties.

I often get reflective after these birthday parties for my sons, am prone to remembering years when things hadn’t gone so well. There was the year we tried to keep Justin on the computer when Zach was opening his presents, which failed miserably, resulting in meltdowns for both. At another party, my husband and I ended up having to carry Justin up to his room for some action I’ve totally forgotten, whisking him past a dozen or more suddenly hushed adults.

Things have not always remained constant at our parties, but one thing has remained consistent with both our families and friends since Justin’s diagnosis12 years ago, something for which I will always be eternally grateful.

No judgment.

There are many other things which, looking back, I am eternally grateful for, and if you’re reading this and are a family member or a friend of a parent whose child has just received an autism diagnosis, I hope you take a minute and peruse. My husband and I were very fortunate with the way the people in our lives reacted.

1. Don’t judge.

You may not understand why your friend/family member is handling her child’s meltdown/insomnia/refusal to eat/need to line everything up in the way she is. Trust me, she knows better than anyone what to do, and she knows her child best. Only offer suggestions if she asks for them.

2. Offer to help, and mean it.

She may be so overwhelmed she might not even know where to start asking for help. Give her time. She may need you to go on a doctor’s visit with her, or watch her child while she takes siblings to another appointment. She may just need to get out of her house for a few hours and take a break. Whatever she needs, try to be there for her, and
be there multiple times.

3. Initially, don’t send her research.

Trust me, she will be logging in a few million hours on the Internet. Hold onto whatever you find until things have calmed down a bit and you feel she can be receptive to your help.

4. Never compare her child to your second cousin’s neighbor’s high school sweetheart’s child with autism.

Autism comes in many shapes and sizes. Just because somebody’s child talked at 7 does not mean your friend’s child will. Comparisons are odious.

5. Don’t tell her he/she will grow out of it.

Autism is a lifelong neurological disorder. There are challenges and differences across the spectrum. Respect that.

6. Make them a meal.

Take the time to bring them dinner if you live nearby. Random acts of kindness cheered up my family immensely in the months following our sons’ diagnoses. They were bright spots in our day when facing meltdowns, sleeplessness, and mounds of paperwork for early intervention and school placements. Make the effort.

7. If you know of anyone with a child with autism who might be a positive support for your friend, hook her up.

The key word here is “positive.” She may need someone to vent to, who may even have suggestions and referrals to services and people who can make her life easier.

8. If the family needs money and you can help, offer it.

Insurance reform has helped immeasurably in covering autism therapies, but there may be a lag time before they kick in. Offer to fill in the gap if you can.

9. Just listen.

Don’t share with your friend that your neurotypical child had sleeping/eating/behavioral issues, too. You have no idea how long your friend/family member might be dealing with these challenges. Just be there as a sounding board.

10. Get both parents out.

Find a way for them to enjoy a peaceful dinner or a movie once a month. It can help both them as individuals and their marriage immensely. They may protest at first, but they likely need it whether they know it or not.

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.

Lead photo source: Thinkstock Images

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Why We Pursued Our Son’s Autism Diagnosis, and Why It Doesn’t Define Us

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If I am being honest, I have always known in my heart that he was wonderfully different. Quirky, I used to say. But it wasn’t until this last February, shortly before his 8th birthday, that we pursued an answer.

Why, you ask? What changed? We were at a birthday party for my son’s best friend, and his cake had Hot Wheels on it. My son is intensely focused on cars, or really anything with a motor. The birthday boy went around the table, letting each child pick a car to keep. My son wanted a very specific car, but by the time it was his turn to choose, it was gone.

I had been watching from across the room, my body tense, as I was already anticipating what was to come. I watched his chest heaving, his tiny fists clenching and un-clenching, tiny beads of sweat forming on his upper lip, trying so hard to control how upset he was. But he couldn’t control it. He needed that car. He had to have that car.

What a brat, right? What a spoiled, entitled child! It wasn’t even his party! How dare he! What kind of crappy parenting goes on in a house that raises a kid like that? Except that he isn’t a “brat,” and we’re doing our best, thank you very much.

So I watched this scene unfold, and I couldn’t ignore the stares from everyone else in the room watching my son. I realized with a sinking feeling in my gut that his friends noticed, too.

In truth, so much of this process has felt like a gut punch — the evaluation, the diagnosis, the terminology, the criteria and guidelines and mandates and recommendations. All of it was a confirmation of the quiet whispers that have lived within me.

My sweet, sensitive, talkative boy has autism.

There, I said it.

And so began my journey to seek out some truth. Because one day, I knew he would come to me and want to know why he feels different, why he processes differently or behaves differently, or talks differently. And I am going to give him the dignity of having an answer. Of having a name and a plethora of knowledge and research and resources and names of people just like him and a whole group of us who love him and are here to encourage him and assure him that he is exactly who he was born to be. That he is bigger than autism. That the whole of him is not defined by the DSM.

The hard truth is the days since have been difficult. There is a little bit of guilt for me in saying that I have been grieving the loss of what I thought his life would look like. Life is hard for everyone, of course, but life may be extra hard for him. And it makes me sad because, well, because I am a mother. I am his mom, and I would live 100 lifetimes of heartache, if only he didn’t have to live one. Because we naturally as parents want the world to be fair and just and kind to our children. For them to guard their hearts out of caution, but never out of necessity.

This year has brought us bullying and teasing and confusion about why someone wouldn’t want to be his friend. It has brought struggle. It has brought heartache. It has brought the soul-crushing moment of hearing your child tell you they wish they didn’t know anything about autism, because then they could just be like everyone else.

But it has brought peace, too. It has brought awareness and so much knowledge. There is power in that knowledge, in the slow stripping away of fear and uncertainty. A diagnosis isn’t about learning how to “fix” my child, or how to make him adjust to our narrow confines and ideas about what the world should look like. But rather, it’s about how I can adjust my world to fit his. To learn from him, to grow with him, to nurture him. What I want is for the world to fit into his parameters. Is that realistic? Perhaps not. But here, in my small corner of the universe, I can keep accommodating his unique needs and celebrating his differences. And the truth is, I only have room in my life for the people who are on board with doing that, too.

My sweet boy recently shared some really beautiful insight into his heart. After tucking him into bed the other night, I was leaving the room and I heard his voice: “Mom, having autism is like having a freckle. It’s only one small part of me, but I wouldn’t be the same without it.”

Yes, son. Just like the sky is lit up with thousands of stars, you light up for thousands of reasons, one of which happens to be autism.

mom and son making funny faces
Sara and her son.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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Dad’s Big Idea Helps Nonverbal Daughter in a Way No Other App Could

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TippyTalk logo of rainbow hands in a star shape Rob Laffan wanted nothing more than to help his daughter Sadie communicate her needs. Sadie, who’s on the autism spectrum, is nonverbal and would grow understandably frustrated when she couldn’t tell her parents what she wanted, needed or felt. When she learned to use a picture exchange communication system (PECS) board — a tool that resembles a picture book and allows many nonverbal people to point to what they need — communication became easier. But PECS boards can still present challenges — for one, the person using it has to physically be able to bring the pictures, even if they’re on a tablet, to another person. Also, if in book form, the pictures are easily lost or damaged, especially when a child is using them.

Laffan, a student at the Limerick Institute of Technology (LIT) in Ireland, came up with a solution: “TippyTalk” — a touchscreen communication system that takes a PECS board to a computer, tablet or phone and then transfers the pictures to text messages.

“TippyTalk enabled Sadie to communicate with me even if I wasn’t in the house, even if I was in a different country,” Laffan told Engineers Journal. “When I am in college or when I am away I get texts from her telling me how she is feeling.”

screenshot of TippyTalk, with texts that read "Hi Daddy, my leg hurts." "Hi Daddy, my arm hurts." "Hi Daddy, my belly hurts."

The first screen that pops up when Sadie, now 5, goes to use TippyTalk shows two pictures: one of her dad and one of her mom Emily. After she selects who she’d like to communicate with, she’s offered more than 260 images that range in wants, needs and feelings. When Sadie then touches, for example, a picture of an apple, this text is sent to whichever parent she’s selected: “Hi, I’m hungry, may I have an apple?”

“It was intuitive enough that she knew exactly where she was going. When she saw her pictures, she saw what she wanted,” Laffan told UTV Ireland. “She was able to touch the button and the text was sent out to my phone.”

screenshot of TippyTalk with texts that read "Hi Daddy I would like an orange please." "Hi Daddy I feel like a hug."

Laffan is continually adding images to Tippy Talk.

“As [Sadie] gets older I can enlarge on the images to meet her needs,” he told the Irish Mirror.

On a personal level, the technology has already enhanced Laffan’s relationship with Sadie.

“Being able to understand my girl’s exact desire, needs and feeling has brought me closer to really understanding and loving her little personality,” he told The Mighty in an email. “Now it’s just a case of giving the same joy to other parents like me.”

Screenshot of TippyTalk with text that reads "Hi Daddy, I want my jigsaw please."

screenshot of TippyTalk with texts that read "Hi Daddy, I feel excited." "Hi Daddy, I want stickers please."

Though TippyTalk was designed with Sadie in mind, Laffan says the technology can benefit any person who may find verbally communicating challenging.

TippyTalk won Laffan “College Entrepreneur of the Year 2015,” the top prize at the Enterprise Ireland Student Entrepreneur Awards 2015, earning Laffa €10,000 (about $11,000). With an additional investor secured, Laffan says TippyTalk should be available to the public this summer.

“I’m only a dad with a idea,” Laffan told The Mighty. “An idea that worked.”

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I Needed an Introduction to Autism Long Before My Son’s Diagnosis

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I was a teenager working my very first job. I was a child care attendant at a little mom and pop fitness center, and I had never heard of autism. To be fair, this was over 20 years ago (yes, I admit it), and I lived in a pretty small town. I really liked my job. I loved the kids, and the time limit was only an hour and a half. I could handle any kid for an hour and a half. Then came Sam.

When Sam’s mother walked through the door I knew I was in for a very long 90 minutes. Along with Sam came both an older brother and an infant. Sam’s brother, David, would always make me laugh. He was charming and always tucked his sweatpants into his socks. The infant, Max, did as infants do. Sam was a handsome boy with beautiful blond locks who would never look me in the eye.

The child care area consisted of two small rooms. Sometimes that second room would have to belong to Sam. We split the kids up — the other attendant would take the smallest kids and I would take the big ones. Sam wasn’t violent, he just didn’t seem to know his own strength, which, for a 4-year-old, was impressive. He would pace back and forth, and if a child was in his path, he would simply mow the child over. I knew he wasn’t mean. I wanted so badly for the other kids to understand that, but every time it was the same. Sometimes we had to call down to his mother to pick up early if he was having a bad day. She never seemed mad, just… defeated. Sometimes Sam would look out the window and have a little smile. I would stand next to him and look, too, wondering what he saw. I wanted so badly to connect with him; I could only imagine how his mother felt.

About 15 years later, my son was diagnosed with autism. I wondered if Sam might have had autism or some other special need, too.

After working at the fitness center for years, I got my associate teacher certification to teach preschool. I taught for years before I had my son. Sometimes I would come across other children who would not look me in the eye. Maybe they would pace or hum. But I had still never heard one word about autism or other special needs in all those hours in class. The only course I got was the crash course that came along with getting a medical report.

Years later, I took a class at the local college. It was called “Exceptional Needs,” and it covered many different special needs. It was considered an elective and was only offered every other semester. I needed that class. I needed it long before my son’s diagnosis. I needed it long before teaching.

Learning about children with special needs should not be an elective. As an early childhood educator, you may be the first teacher a child with special needs will have. They deserve a teacher who can identify a need. Teachers need tools to help the other children understand a classmate’s behavior, because those students will go on. Some children with special needs will become integrated, and their peers will grow up. They might have children. Those children might have autism or other special needs. Their crash course should not come with a medical report.

Sam would be a grown man now. I don’t know anything about him. However, I do think about him, particularly when I hear my name over the loudspeaker at the gym.

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. 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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When School Was About Survival as a Student With Autism

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Most kids go to school to learn things such as reading, writing and math. Additionally, they may pick up important executive functioning skills, social skills or enjoy some extra-curricular activities. School can teach children a lot of useful tools and prepare them for life.

But what happens when school becomes less about learning and more about survival? As someone on the autism spectrum who wasn’t diagnosed until tenth grade, that’s what happened to me. While all of my classmates were trying to figure out how to solve homework problems for math, I was trying to figure out how I would live through yet another traumatic day of panic attacks.

My mornings would begin with the sound of my alarm. It was a sound I had learned to dread, because it meant I had to face another day. After hitting the snooze multiple times in an attempt to avoid the terrifying feeling of anticipation, my parents would finally wake me up themselves. I was already running late.

I usually had to walk to and from school, which was about a mile each way. But by this time, I was so stressed out that my mom offered to drive me. Once I arrived, I began to sob. I didn’t want to go in. It was torture to me. But I had no choice. I dried my tears and got out of the car. I could hear the flag banging on the flagpole. That sound still haunts me to this day.

There were so many people in the building. The mixed smells of body odor, sulfur from construction on the building and commercial cleaning supplies were overpowering. I could hear talking, laughing, shouting, lockers slamming and the bell ringing, but I couldn’t hear myself think. My first class hadn’t even started, and I was already in panic mode.

My heart pounded. My breathing quickened. I felt like I was going to have a heart attack. The teachers kept telling me I was fine, but I went straight to the counseling center, which I was very familiar with by that point. They knew me well there. I remember the crisis counselor coming over to me and merely asking if I wanted to go home. I nodded, and they called my house for my mom to come back and pick me up. They knew I couldn’t learn anything in this panicked state, and I had been in this state every day for nearly two years.

It took quite a few months more from that point for the school district to finally allow me to transfer to a school better suited for my needs. A place where I didn’t have to worry about surviving sounds and smells, let alone misunderstandings. A place where I could begin to recover from the daily trauma and finally learn. I eventually graduated from this school in 2007 with a class of fewer than 20 other students.

Education is important, but no one can learn in the panicked state that I was in. It was all I could do just to survive. Our kids deserve better than this, and in some aspects perhaps we have changed for the better. But we still have a long way to go in terms of understanding and providing for students with differences. Let’s make sure that no more students fall through the cracks. Let’s make school a place where students can focus on learning — not just surviving.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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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An Autistic Woman and Her Dad Watched ‘The A Word.’ Here’s What They Thought.

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In a review on The Guardian, Maya Hattenstone, who has autism, and her dad Simon Hattenstone discussed the first two episodes of “The A Word,” an upcoming BBC TV series about a family whose 5-year-old son Joe just received an autism diagnosis. You can read their full review here, but we’ve highlighted a few main points for you.

As a parent, Simon Hattenstone found parts of the show relatable — when Joe feels isolated at his own birthday party, how he has difficulty making friends and how other onlookers make assumptions and snap judgments about him and his parents. Hattenstone’s two biggest issues so far with the show are 1) it, like many other media portrayals of autism, has an autistic character who behaves prodigy-like (Joe’s mind works like a musical database). “His dad even calls him Mozart,” Hattenstone writes. “And this is the classic autism trope.” Second, although Joe’s mother describes him as funny and a chatterbox, Hattenstone says the character rarely is either. As a dad who loves his daughter’s humor and “quirks,” Hattenstone hopes Joe’s character begins to show more personality.

In Maya Hattenstone’s review, she describes the moments that most resonated with her — Joe standing alone on the playground, finding it difficult to change routine and melting down at his birthday party. Like her dad, Hattenstone found Joe’s musical affinity a bit of a stretch, even though she loves music and lyrics. “Calling him a musical genius seemed like a stereotype,” she wrote. She also found the speed of reaching his diagnosis unrealistic. “I came away from ‘The A Word’ with mixed feelings,” Hattenstone wrote. “While it was thought-provoking, Joe’s character felt like a standardized, generic portrayal. For me, it only cracked the outside layer of autism.”

family members of "The A Word" sit on their porch
Photo courtesy of AMC/SundanceTV

“The A-Word” is a one-hour, six episode show that will air on the SundanceTV channel following the BBC premiere on March 22, according to an AMC Networks press release. It’s an adaption of an award-winning 2010 Israeli series called “Yellow Peppers.” The announcement of the show comes nearly a year and a half since the premiere of the sixth and final season of NBC’s critically acclaimed show “Parenthood.” “Parenthood” centered around the story of the Braverman family and often featured the challenges of one of the characters, Max Braverman, who has Asperger’s syndrome in the show. As it turned out, Max Braverman was based off the son of the show’s creator, Jason Katims.

Julian Maha, M.D., the founder and CEO of KultureCity, an Alabama-based autism nonprofit, thinks “The A-Word” has the potential to have a positive impact on our society, but that depends on how the story is told.

“Programs like ‘The A-Word’ bring a very interesting concept to television,” Maha previously told The Mighty in an email. “At the very least, it will help create more awareness on the topic of autism. At its best it could help promote autism acceptance and inclusion. The key is in the show’s execution and storytelling. If that is successful, this show could go a long way in helping the general public understand that autism can be an opportunity to live a life without limits outside the box.”

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