Five Things Only an Autism Parent Would Understand

There is a famous quote by C.S. Lewis that says, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.’”

As a parent to two children with autism, I often think I am alone, struggling with things that I think nobody else would understand. And then I meet another autism parent, and another, and it seems we have so much in common.

Here are five things I have found that every autism parent understands whether your child can speak or not, whether they have learning difficulties or not, whether they are now adults or still in nappies. If you know these five things, know this too: You are not alone!

1. The Look

You know the ones where every eye is on you and your child because they are acting differently? Whether they are flapping, spinning, screaming, humming, rolling on the floor, or running away, autism parents know that look well. The look of judgment, curiosity, condemnation and contempt. Sometimes, it is a solitary look; other times it is all-consuming and you can feel their eyes staring right through you.

We are raising unique, smart, wonderful children that are too often misunderstood. Hold your head high, autism parents, and keep walking. It’s stressful, but it gets easier!

2. The Exhaustion

Even if you are blessed with a child who sleeps (which isn’t that common with autism), we all know the exhaustion. The appointments, the therapies and the constant need to interpret the world on your child’s behalf takes it out of you. Exhaustion causes so many of us to struggle with health problems—both physical and mental—and forget the most basic of things. Sleep deprivation and stress can make the most intelligent autism parent forget how to spell the simplest of words on a vital form. Be kind to yourself. You are raising an energetic and spirited child who will change the world; but right now they’re zapping your energy. We have all been there!

3. The Fight

I have yet to meet a parent who has had their child diagnosed quickly and easily, had every service they require to make their child the best they can be given freely and plentifully, or had full support in education from Day 1. Maybe there are some out there, but it is rare to find.

From the moment we suspect our children are struggling, we enter a fight: a fight for therapy, a fight to be listened to, a fight for the best education for our children. We fill in forms just to have things declined by people who have never met our child and, as if this was not bad enough, we then have to fight a society that still views autism as “Naughty Child Syndrome” or “made up.” If we complain, we are seen as troublemakers; if we call too often, we are pushy; and if we write about our children on social media, we are either over-sharing or attention-seeking! It makes no difference what age your child is or what ability they have, one thing I have found in common is the fact we all seem to have to fight at some point.

Can I tell you something parents? Our children are worth it. Keep fighting.

4. The Constant Vigilance

When you have a child or adult who struggles with communication, be they verbal or not, it is a guarantee they will need more support and supervision than others. When your child has no awareness of danger and is vulnerable, you have to be always vigilant. Even when they are out at school or with carers, that vigilance never eases. We have to be aware of where they are and who they are with always because we have children and adults who are easily confused and anxious.

We have to think about dangers long before they appear, like water, roads, open doors, sudden noise and objects they may eat. We live with a heightened level of anxiety and awareness that other parents often misinterpret as overindulgence or being hyper-protective.

It’s hard, I know that, but you can do this!

5. The Worry

The worry is always there. Worry about change and how it will affect them; worry about political issues that could affect future benefits; worry about what will happen when we die; worry about whether they will ever be accepted and understood. Before they start their education, we worry about teachers and friends, and then as they get older, we worry about jobs and relationships.

Yes, all parents worry about their children, but we have so much more to think about. Nothing is taken for granted when your child has autism. Friendships are confusing and stressful, language is a mystery, and repetitive movements are misunderstood and mocked. We are raising babies the world finds fascinating yet exposed, interesting yet misunderstood.

We have reason to worry. Yet, we also have reason to be at peace. There are teachers who will care, assistants who will go that extra mile and employers who are ethical.

Stay positive. Together, we can help make the world a better place for all our children. 

Have you been there? Do you know the looks, the exhaustion, the fight, the vigilance and the worry? Welcome to the wonderful world of autism parenting. It’s hard, but well worth it. And it’s great to find others who understand.

Siblings on the Spectrum

Growing up, I knew I wanted children—a family of my own where I could let my children know that they were loved and always be there for them (somewhat opposite to my upbringing).

I met my hubbie as a single mum: two became three, then became four with the arrival of T, and then five with D’s arrival. I felt complete.

Bearing in mind that T and D were 18 months apart, it was a busy time. I’d either be balancing one on each hip or smiling as my little “pack” followed me everywhere, leaving behind a trail of Match Attax cards (in T’s case) or play food and Playmobil characters (in D’s).

And then something unexpected happened. Teachers at D’s nursery recognised within her first term that her speech, social skills and ways of doing things were far behind her peers. We investigated online ourselves whilst waiting for the first of many appointments and one word came up again and again—Autism.

D’s official diagnosis came when she was 4.5 and T was 6. It was an unfamiliar path we travelled as we journeyed from grief (for the child we wouldn’t have) to fierce protection of our frightened little girl who suddenly had this “label,” one that she would always carry.

It was hard to explain to T about his sister. We took to saying that our brains were made of puzzle pieces and, with his sister, hers overlapped in some places (areas) and had a bit of a gap in others. It seemed to help him; he’d see D melting down or becoming extremely anxious and say, “That’s her puzzle piece doing that, isn’t it?”

(I used this puzzle piece scenario before I was active on social media and realised that puzzle pieces seemed to be used by a lot of autism organisations. It made me think, “Jeannette, you’ve got this, now do more to get awareness out there.”)

There were times when I sensed that T felt embarrassed. For example, if he was eating lunch in the hall at school and D was refusing to come in because she was overwhelmed by sensory issues. There were times when there’d be a sports day or assembly and I felt torn between the two, wondering whether to comfort my overwhelmed daughter or watch my son compete. In a way, it felt easier on T that D received her SEN statement and moved to an SN school. We wanted him to enjoy school life without feeling over-protective towards his sister all through his school day, because he did.

When T was diagnosed with high-functioning autism at age 10, it was more of a relief than a surprise. His traits were becoming increasingly apparent in public, and however much he masked them during the school day, he was having issues with fellow pupils and teachers.

So, my determination to raise awareness and acceptance of autism doubled.

Having two children on the vast autistic spectrum isn’t always easy. At times I feel like I should have a referee’s whistle, but that wouldn’t work: T would respond quickly (as his passion is—and always has been—football) but the sudden, sharp, shrill noise would terrify D.

I can’t say they’ve ever really “played” together. Whether it’s an attempt at a board game or a splash in the pool, T will always make it competitive, try and guide D into a contest, and then get frustrated and annoyed when she doesn’t want to or melts down. It’s at those times that I hanker briefly for the traditional “Oxo advert” family, the children all smiling around a table, eating the same food and cracking jokes. But it’s only briefly, mind.

It’s not all doom and gloom, of course. D might not “get” traditional jokes and humour, but she absolutely loves “Keeping Up Appearances” and “Mr Bean,” even though she’s watched them so many times she knows exactly who will say what and when, slapstick humour obvious . T is more droll and more sarcastic in how humour and tone. He also does a pretty fantastic withering glare, which more-often-than-not is aimed at his sister, if he disapproves of something.

But, they have each other’s backs and are extraordinarily protective of each other, even if it’s not always shown.

I love them both, and am so proud of them and the daily challenges they face.

An Autism Mom’s Feelings About Grief

“You can’t stop the tide.”

I told my autistic son this during his first trip to the ocean. The vastness of the water frightened him and so, in his own way, he sought to control it by holding out his little hands and bravely shouting at the waves to stop. We’ve all been there, struggling to get our footing when the riptide moments of life threaten to pull us under.

Never is this truer than when someone you love is dying. This summer, my family is preparing to say goodbye to my father-in-law, the kindest and most hardworking man I’ve ever known. Over the last few days I’ve worried about and watched my sweet boy struggle once more to stop the tide. Except this time it’s the vastness of his emotions that frightens him.

People with autism are so often portrayed as lacking emotions. But my boy is often flooded with them, to the point that he nearly drowns. When this happens I wade through the murky depths of his feelings and try to help him stay afloat. This isn’t easy these days since half the time I feel like I’m drowning, too.

Grieving with a special needs child, like anything else, seems so much harder. The meltdowns, the overstimulation, and the judgmental stares of strangers heighten the moment. Add to that the common struggle of helping your child make sense of something that you yourself don’t understand. I wish I could impart some kind of wisdom to other parents out there that, like me, are treading water in the sea of grief, but I sadly don’t have any answers.

Instead, I want you to know you’re not alone. In the chaos it’s easy to feel isolated. All the things that make your child’s day easier—staying on schedule, eating healthy meals, and having a routine—are nearly impossible in these situations. It’s easy to panic and flail as you frantically try and get some semblance of control over your universe.

It’s OK if you stumble and fall along the way. Saying goodbye is hard and it should be. But it’s important to remember that when you struggle for control, you risk drowning. It’s only when you lay back, trust the water, and float that the tide brings you safely back to shore.

The Autism Community: A Community of Strength

When my son was first diagnosed with autism, I enrolled in workshops that would give me valuable insight into a condition I knew very little about, but I rejected the support of the autism parenting community.

I didn’t want to hear what they had to say because my only taste of it had been a bundle of negativity. I couldn’t cope with that as I had plenty of my own I could pass on. I wanted to hear stories of hope and stories of courage, and I feared that I wouldn’t find it there. Don’t get me wrong: I didn’t want false hope or lies, but I needed to find people on my wavelength. Deep down, I knew that might be an impossible task given what my wavelength is.

I learned to find my own way and some of that was to my advantage. I relied on my own innate parenting skills to muddle through the challenges of parenting a child on the spectrum.

Along the way, I’ve learned an awful lot about myself, and I’ve also learned how to choose my battles wisely and increase my patience (some would disagree). Most importantly, I’ve learned that my way is not the only way (though some would argue I’ve not mastered that one yet).

As time progressed after Joseph’s diagnosis, I became more confident in my own knowledge. I didn’t necessarily believe everything I read and I felt more comfortable looking to the community for support and guidance. I saw that people had different beliefs and strategies for dealing with their autistic child. I saw that some believed their child was a blessing, whilst others struggled to comprehend why they had a child with autism. I saw people debate over what they perceived to be the correct use of autism and autistic, and I enjoyed reading different takes on the subject.

What I didn’t expect was that some people would view it as an opportunity to criticise and attack other people’s views and life choices. I’m not sure whether it’s because it’s easier through social media, but I doubt very much that the comments being made would be made face to face.

Our children’s autism journeys are unique, and we try and raise awareness globally by educating others that there are lots of different facets to autism. Why is it so difficult to accept that we as parents are unique too; that we do not all parent the same and we all have different experiences?

When I started writing my blog, I dared to push my head above the parapet and say the things I wanted to hear so many years ago when I was first looking for advice and help. I wanted to be able to feel comfortable saying that acceptance was hard and that there were days I wanted to kick the shit out of autism for the challenges it brought my son. I did not want to be vilified for owning up to those thoughts and I wanted others to know that they were not alone.

None of these thoughts make me love my son any less; they actually make me love him more, if that is even possible. Every single one of us wants what is best for our child, we just try and achieve it in the way that works best for us.

Let us learn from each other and accept and embrace our own differences, not just those of our children.

We are all striving for the same destination—let us gain strength from each other.

Life With Autism: Richard Mylan & His Son, Jaco

Welch actor, Richard Mylan, talks about raising his autistic son, Jaco, in a recent BBC documentary.

They’ve both come a long way since Jaco’s diagnosis. Richard, who didn’t want to talk about it at first then found that when he did talk about it, nobody really understood. People thought he was in denial, and even deluded, about his expectations for Jaco. But Richard believes you can’t put a limit on a child, and especially a child with special needs.

And he’s learned to just let Jaco be, to talk if he wants to talk, to just exist quietly if he doesn’t want to talk. “All I needed to do was work out what life on his terms was, and live it with him.” Watch below.

She Has Non-Verbal Autism, But Her New Friend Understands Her Just Fine

If you have a non-verbal child, chances are you know how hard it is for them to make friends. That’s why we know you’ll love this video.

The mother of Carly Jade, a 6th grader with non-verbal autism, took the video at a local Chuck E. Cheese after she saw the way that Carly Jade interacted with her new friend, Zoe. Zoe is neurotypical, but seems to have figured Carly Jade out. As Shannon, Carly Jade’s mom, explained in her Facebook post:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she’s often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her..

So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed!

We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

We’ll let this wonderful video speak for itself:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she's often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her.. So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed! We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

Posted by Shannon Sommers on Tuesday, May 23, 2017

5 Ways Being an Autism Dad Has Changed Me

Most guys have a vision of what life will be like when we become a Dad.  We think about teaching our sons sports, helping them with homework, talking to them about girls, and then one day sending them off to college. I remember when I used to look forward to the day I could teach my son to play baseball and take him to games with me.

When autism enters your life, it changes everything. Autism doesn’t simply change the way you parent. It changes you as a person.  Here are five ways being an Autism Dad has fundamentally changed me.

The Not-So-Good Changes

1. I Now Hate Little League
I don’t just hate little league. I hate all kids’ sports. Rather, I hate attending kids’ games. It just makes me very sad. I’m reminded of what will never be for my oldest son, and the things I will not be able to experience with him. He has pretty severe autism, so even things like Miracle League or Special Olympics are out. We tried Miracle League basketball and soccer years ago, but he just ran around, spit at his buddy, and eventually bit his buddy too. I gave up on sports, as it was just too painful for me. The saddest part about it is that he would be so great at it. You can tell he would make a great athlete if autism didn’t rob him of the attention and focus needed for sports.

2. I Can No Longer Relate to Other Dads

One of the hardest things about being an Autism Dad is the isolation. It is tough to meet new people and become friends with other dads. I simply can’t relate to them. I am a stay-at-home dad with three kids, one of whom has severe autism. Most guys like to brag about their kid’s accomplishments or discuss what’s going on at work.  I just can’t build a meaningful connection with other guys now, as we just don’t have much in common. I wrote a whole piece on the loneliness and isolation that comes with being an Autism Dad.

The Good Changes

3. I Am Smaller as an Autism Dad

I don’t mean that metaphorically. I am substantially smaller today, 11 years after autism, than I was when my son was born. As I noticed how different foods affected my son’s behavior, I began to research and learn how food influences all of us. A few years ago, the whole family adopted the paleo diet. I personally lost nearly 100 pounds and continue to maintain that weight loss. If autism never entered my life, I don’t know that I would have gotten the kick in the pants I needed to stop my poor eating habits. I just shared my before and after paleo pictures on my blog if you want to see how dramatic this change has been.

4. I’m a Better Person as an Autism Dad: Patient, Kind, Accepting

I’ve always had confidence in my ability to be a good Dad, but autism has really tested that confidence. It’s shown me patience I never knew I had. Sometimes, it pushed hard and kept pushing until I broke. I’ve exceeded my breaking point many times in the past decade. However, autism has also taught me that it’s OK to fall sometimes, so long as I pull myself back up. It’s built in me an incredible resilience and shown me things I never thought I was capable of.

Autism showed me not to be so quick to judge. You never know what is happening with other people or the situation they are facing. Now, I try to be kind to others even in the face of rudeness.

Similarly, I’ve also learned to be more accepting. Not just of other people, but of autism in general. Through all the bedtime “poopisodes,” all the wet pants, and all the screaming, I accept my son for who he is. I love him so much that words can’t even express it.

While I’ve learned to accept his autism, that doesn’t mean I’ve stopped pushing him to be better. Despite his severe autism, he’s just as capable of improvement. Like all dads, it’s my job as his Dad to push him so that he becomes the best version of himself that he can possibly be, autism or not.

5. I Recognize a True Connection

My son, Ethan, is almost 11 years old, and he has never said the words “I love you, Dad.” That doesn’t mean he’s never said I love you to me. He says it when he looks at me with his glowing eyes and beaming smile. He tells me how much he loves me when he runs to me and says, “Daddy run.” Ethan shows me he loves me when he flops on my lap as I sit on the couch, and when he leans his forehead to mine and says “mwuah” (his way of giving a kiss). Being an Autism Dad has shown me what it’s like to truly be connected to someone with no words required.

Connected Without Words

When times are hard, I always think of this one specific time where Ethan showed me just how much he loves me. It was last fall. My wife and I had gone to the Autism Education Summit in Dallas, and we were gone for about four days. It was late when we arrived back home. The kids were already in bed.

I woke up the next morning, and walked to the living room. Ethan’s back was to me as he was watching his favorite YouTube clip on TV. I remember this so vividly. I said, “Ethan,” and then I waited for him to respond. He turned around and looked at me. He gave me the biggest, brightest smile you could possibly imagine. Then, he ran over, giggling, and jumped into my arms. Laying his head on my shoulder, he wrapped his arms around me and squeezed me tight. It was the first real, spontaneous hug I ever received from him. All the while, we both had huge smiles on our faces.

It’s one of the single best moments I’ve ever had.

 

Looking Back Now Is Easier Than Looking Forward Was Then

It was strange, thinking back, how the course of our daughter’s life changed in a moment. A moment that took place in a portacabin, painted with cheery cartoon images, but a portacabin nonetheless.

“Your daughter has a diagnosis of autism.” It wasn’t unexpected, but the tears still flowed as a bundle of leaflets were passed to us, together with a box of tissues.

Our daughter didn’t notice the diagnosis or the tears. She carried on lining up her toys, her little toys in the small bag she carried everywhere for security. Under her arm was her bunny, who went everywhere with us—a comforter.

We knew that we’d be receiving a diagnosis at the meeting, but hearing the word “autism” spoken still cut into our hearts. The feeling that her life would now be defined by a “label”; one that was necessary to enable support to be granted at school.

Telling family members provoked different reactions. One didn’t mention autism by name, but sent us a note referring to our daughter’s “problems.” Another said, “Well, there’s never been anything like that on our side of the family.” I did wonder if they felt that sense of grieving for the child we wouldn’t have, coupled with an immense sense of fear for our daughter’s future.

In the weeks that followed, I found it hard to talk about it without crying.  I guess the masses of emotions rushing around in my head had to find a way out and they did, through tears. I found myself imagining the events we probably wouldn’t see for D, like a wedding, children, a life partner. It was quite ridiculous, really, as it only served to upset me more.

I was a child-minder at the time and couldn’t help but compare the children happily playing in the garden to our daughter, who would put toys and/or books into a pile in the centre of the room and walk around them with a totally blank expression. She didn’t respond to prompts or offers of a cuddle. She was totally in her own zone.

I don’t know exactly when my mindset changed to a “can do” approach. I think it was around the time that D very hesitantly traced the letters of her name on a piece of paper sent home from school. That produced happy, proud tears on my part. Way behind the other children in her class, D could count to 50 by age 3 but had very stilted speech. Reading phonetically wasn’t happening and the (mainstream) teachers just seemed exasperated by her meltdowns, her unwillingness to enter a noisy/busy classroom, and her reluctance to join in. They described D as “flighty,” which hurt. D’s TA was fantastic though, understanding that D needed a “softly, softly, get down to her level” approach.

It took a while to get a Statement of Special Educational Needs for D. The first one was rejected and the second granted—it took about a year in total. It added so much stress to our lives, wondering why the “powers that be” were treating our child solely as a budget figure and not the individual that she was (and still is). We realised by then that mainstream education didn’t suit D and there wasn’t a chance of a SN school without a statement. The pressure felt immense and, all the while, we could see just how much D was struggling in the mainstream environment. It wasn’t for her.

It was a difficult decision to make for our then five-year-old daughter: Do we stick with mainstream education with exams at the end of her schooling? Or opt for the SN school, which didn’t offer exams but instead focussed on life skills and social skills and offered a smaller class size and higher staff ratio?

There was no contest really, we chose the environment we felt would make D happy and where she could fulfill her potential—the SN environment. From that very first afternoon and D’s smile as she rushed towards me, we knew we’d made the right choice.

Eight years on, we know we made the right decision. Our daughter is now a teenager and we know she wouldn’t have fit into the secondary school environment. She’s never going to be an academic, preferring crafts, music and low-contact sports. She’s happy, and we’re happy. And that’s everything.

New York City ‘Detective’ Program a Hit With Kids With Autism

If you’re planning a trip to New York City, be sure to add a stop at the New York Transit Museum in Brooklyn to your itinerary. The museum, open since 1976, has exhibits and collections featuring all things to do with public transit in the Big Apple, including the evolution of the subway system, part of a city bus where visitors can take the wheel, and a scale-model collection of trolleys and work cars. It is located in a former subway station.

For the last five years, the Transit Museum has also had a “Subway Sleuths” program for children in grades 2-5 on the autism spectrum. In 2016, the innovative program won a National Arts and Humanities Youth Program Award.

Meant more for locals, Subway Sleuths is an after-school program that “uses a shared interest in trains among kids on the autism spectrum as a means to encourage peer-to-peer interaction and develop social skills and confidence through goal-oriented sessions,” according to the museum’s website. Participants work in pairs and collaboratively in groups to solve mysteries in the museum’s subway station exhibit, using clues and walkie-talkies.

According to Regina Asborno, deputy director of the museum, “It’s all about taking turns and communicating, but we layer it all around transportation, which is something they love.”

Space in this program is limited to 36 children, and all candidates go through a screening process. “Semesters” run in both the spring and fall, and scholarships are available. Parents of past participants attest to the social skills that their children gained, as well as new friendships and increased confidence in communicating. All sessions are run by a Transit Museum educator, as well as a special education teacher and a speech-language pathologist who have been trained in ASD support.

In addition to the Subway Sleuths program, people with ASD are also attracted to other features of the transit museum, including the interactive exhibits.

“You have a track and a train and you have a schedule and you have times and places and it’s visual and you can see it and you can experience it. And it’s knowable. It’s not a lot of change. And that’s calming and very comforting,” explains autism specialist, Susan Brennan.

Recently, representatives from 60 cultural institutions came to learn about ways to use the exhibits at their own museums to attract and engage the autism community. We look forward to the spread of autism-friendly programs and exhibits to museums around the world.