Mother with children on the beach at sunset.

How My Autistic Children Helped Me Accept My Own Autism


I was diagnosed as autistic at the age of 52. I had worked it out well before then! The realization came when my oldest child was diagnosed at age 11. I have a clear memory of being in the car with him as he had the routine post-school meltdown. “I’m a freak,” he cried and yelled. It’s funny. I was so calm. “Am I a freak?” I asked him. “Really, do you think I am?” He was so shocked! I went on. “Because you are just like me. Like my brother, like my mum and my dad. Are we all freaks?” His stunned face, silent, still sits in my mind. We sat in that car for ages. And I explained how normal he was to me. How familiar. How I understood his manner of seeing, thinking, being. That yes, life would present challenges, but I was OK. Wasn’t I?

Well, I’m OK now. But it took 22 years from the time this darling boy was born before I reached my safe harbor, my autism diagnosis. I had a pretty typical diagnostic trajectory for autistic women. Mental health issues in my teens. First diagnosis – anxiety. No, really? I had already worked that out. And I carried on. The came post-natal depression. The moment my boy was born I stopped sleeping. And he didn’t sleep much either — 45 minutes at a time for the first 10 months, punctuated by screaming. I got up every morning and sobbed as my husband left for work. My doctor told me I was “just” tired, because I was “too sensible to have post-natal depression.”

During my second pregnancy, I had ante-natal depression and five months of hyperemesis – I vomited day and night without respite, except being hospitalized to rehydrate. This couldn’t possibly be anxiety-related, according to the doctors; it was “just” morning sickness. My darling daughter was born and things just got worse. The house was perfection. I cleaned obsessively. The children were routined within an inch of their lives. I barely ate. I started throwing up and having the most dreadful moments of… well, horror. I had to call an ambulance a few times, because it wasn’t safe for me to be home. And yet, not once was I told that these were panic attacks.

Then came That Day. I called an ambulance, got to the hospital and demanded a psychiatric assessment. By this stage, the baby was 4 months old, starving because I was emaciated from being unable to eat and all the vomiting and I was very, very scared of harming myself. The emergency team diagnosed post-natal depression within moments. I was so unwell that the baby and I spent seven weeks in a psychiatric mother and baby unit. They saved our lives. I started therapy with a psychiatrist, went on meds, and had ongoing, weekly support groups. And received diagnosis number two – generalized anxiety disorder (GAD).

As my two darling children grew and I saw my psychiatrist weekly, we noticed that I wasn’t recovering as expected. I seemed to not really fit the “usual” pattern. So along came diagnosis number three, bipolar disorder. I started medication and… nothing. No better, no worse, just the endless same not quite right. Anxiety, sensory difficulties, occasional auditory hallucinations and difficulties with communication. I came off the medication.

We had baby number three. I had five months of hyperemesis again, and later the predictable PND, and spent another seven weeks in hospital back on anti-anxiety meds. I was so relieved. Compared to the bipolar medication, they did help me cope. My sensory challenges reduced, and I didn’t get so worked up about getting things right. Having things “just so” stopped being an almighty obsession. Doing cognitive behavioral therapy (CBT) and mindfulness at my weekly support group helped a lot too.

Life went on — a hectic life with three incredibly quirky, sensitive kids who weren’t coping with the world around them. Bright, inquisitive, but socially unusual children. And that’s when the diagnoses started. In birth order, one after the other. Light bulb moments, one after the other, where each child seemed to come into focus – because they had entered my world. I’d often felt like a failure because my children didn’t respond to what the parenting  world was telling me to do. But they responded – and thrived – when I used my mother’s methods, and her mother’s. When instead of forcing them to do what they were supposed to, I listened to my instinct and did what they needed. And when I accepted there was a name for what my family of origin had been, and that it fit me too. Autistic.

I had another bout of mental illness at menopause, about five years ago now. Only this time when I had therapy, I had something to contribute that altered how my therapists worked with me. I disclosed my children’s diagnoses, but I didn’t yet claim it for myself. But in my own mind and heart, I had no doubt whatsoever. Instead of fighting the anxiety, I was taught to work with it. To accept that anxiety was an integral part of me and to manage its effects on me, and to learn to live with it. With the right meds, the right therapy, and with my own secret self-knowledge, that last recovery was the most successful.

I have never felt so well in my life, because that’s when I started to treat myself the way I treated my children. I realized that sleep was essential – my downtime. I started to honor routine and habit in my life, rather than fighting them. I became conscious of my sensory challenges. All those things I had taught my children to do, I applied to myself. And life has never been better.

As a treat to myself a couple of years ago, I saved up the money and booked an appointment with a specialist in the female presentation of autism. I received my diagnosis. I do not have bipolar disorder. I do have a mood disorder, which is defined by having had multiple episodes of depression. And I will live with anxiety ’till the end of my days. But that’s because I am autistic.

The obvious question is – does it matter that autism was never suggested, investigated or diagnosed? Yes it does. You see, life has been a little too exciting for me recently. I’m not feeling so good, mentally. One child is doing their last year of school, one has had depression, and the third came out as trans. I recently saw my psychiatrist and told her I am a bit worried about myself. And we discussed my autism. Not depression. Not anxiety. We talked about how I have had too many transitions to manage at once. I need to work through, process and synthesize them into new realities. We looked at my need for downtime to do this, and how to make room for it.

She and I discussed my current sensory disturbances. My body has felt encased in mud and like I am wading through the world, feeling the air thick and damp around me, slowing me down. Separating me from… stuff. And the humming in my ears, which I sense as my mind working overtime, trying to catch up with my new realities. In fact, knowing I am autistic made an enormous difference at my appointment.

I don’t need my meds changed. I don’t need to go to hospital. My doctor confirmed it. I need time and space. To respect the messages from my body and mind. To let my autistic brain do its work and find a safe way for me to be. This is knowledge equaling power. Power I never had when my autism lay hidden, its effects unknown and uncared for. Because my doctor recognizes that I am autistic, I know I will recover quicker than ever before. Because knowledge is power.

I am autistic. And yes, it does matter.

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Thinkstock photo by TongRo Images.

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When My Son on the Autism Spectrum Performed On Stage


What a glorious night!

We were at the theater, an older, slightly worn but very classy one near our city’s downtown. The lights went down. The story and music began and I was as entranced as I could be. In my opinion “Beauty and the Beast” has always been one of the best Disney movies ever. It’s a story in which more than one character is transformed by the events of the story and by love.

By the end of the show, when the cast took their curtain calls, cleared the sets and headed for IHOP to ride the wave of adrenaline, I was riding it with them.

It reminded me of the line from My Fair Lady: “I could have danced all night, and still have begged for more…I’ll never know what made me so excited, why all at once my heart took flight!”

Well, unlike Eliza Doolittle, I knew exactly why I was so excited.

My child on the autism spectrum was on the stage, acting, dancing and singing.

In those few hours, amidst the emotions that flooded me, I felt hope.

Before my eyes, after 10 years, our lives were changing.

I wouldn’t have believed it, even a few years before. My life centered around what my son could handle and the number of triggers he could cope with per day.

 

Our life together was relatively simple, with few outside activities because we could only handle so much stress.

Some things I felt he had to do — like occupational therapy — and we set up a reward program to motivate him.

He went to a STEM class, which was OK because he liked the science topics and because I was with him. He struggled with group activities and needed supports in social situations.

He went to church with us because it was non-negotiable for me, but we modified our time there for him. Most of the time he didn’t participate in the children’s program because it was overwhelming for him. Instead, we drove two cars so my husband and I could take turns staying longer to visit or serve, while the other parent took our son and our other children home.

When we visited friends, he did fine. When they came to our home, those times were usually fun and enjoyable, even if we dealt with an occasional meltdown.

Visiting with other moms while kids played was not an option for me; my son needed my ongoing support.

There were months and years when I did not imagine my life looking different. We homeschooled and we stayed home most of the time because that is what was best for my son.

But there he was on the stage.

All because a teen theater group’s director was willing to include him. All because the environment was one of respect, care, professionalism and mutual growth.

All because God does amazing things.

Editor’s note: This story has been published with permission from the author’s son.

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To the Teacher Who Will Be Working With My Son on the Autism Spectrum


Dear Teacher,

I realize you’re busy getting ready for the upcoming school year. You are probably spending many unpaid hours unpacking and organizing your classroom with little help. I know you’re spending your own hard earned money buying school supplies and your nights might consist of preparing lesson plans and schedules. As a parent, I see and appreciate all that you do and the extra challenges you face while just trying to do the job you dreamed of having.

I understand sometimes it may feel like a thankless job and at times you may feel stressed and frustrated beyond words, yet you mask it with a smile because so many people are watching and counting on you. I wonder if when it comes to dealing with administration and co-workers you feel your ideas and opinions fall on deaf ears; I understand how invisible that could make you feel. I relate to how frustrating it is when you feel like you have lost your voice. Your struggles and plight to be the best educator you can be does not go unnoticed by everybody, especially parents like me.

No, I am not a teacher, a paraprofessional, an aide, secretary or even a student. I’m not even a janitor, lunch lady or librarian. Nor do I have a teaching degree or credentials. In fact, when it comes to how the inner workings of a school are maintained, my knowledge of it stems from reruns of, “Saved by the Bell.” So how could a regular parent like myself relate to some of your feelings? How could I have any clue about the daily struggles you might face? It’s because I am not just a regular parent. I am the proud parent of a child with a disability.

Just like I do not know much about being a teacher, unless you are the parent of a child with disabilities, a special education teacher, have taken special education courses (which most general education teachers are not required to take), or have friends and/or family members you routinely visit who have children with disabilities, then I hope you hear me. I want you to understand me.

For us, there is no summer vacation or spring break where we can just relax and toss our worries and fears aside until school starts back up again. When it comes to parenting there are no vacations and our breaks might consist of taking five sips of coffee instead of chugging down the entire mug in a single gulp! But it doesn’t have to be this way all the time, and you as a teacher can help. Which is why I have compiled a list of ways we can not only help, but also listen, accept and respect each other’s feelings and struggles along the way.

1.  Details.

I need details! When I ask you how my child’s day was at school (my child has limited verbal skills) please don’t tell me, “Good!” Good? What does good mean? Does good mean he spoke and interacted with other children? Does good mean he made it the entire day without a meltdown? Does good mean he got glue on his hands and didn’t react as if it were battery acid? Because my definition of “good” and your definition of “good” are probably not the same. My child communicating with other children without being prompted to do so, isn’t just good, it’s absolutely amazing! My child getting his hands dirty while doing arts and crafts without asking to have his hands washed, or just quitting altogether isn’t just good, its a major accomplishment! My child going eight hours without feeling too overwhelmed and letting the effects of a sensory overload get the better of him isn’t just good, it’s a freakin milestone! “Good” is something a parent like me associates with you getting front row seats at witnessing a major developmental milestone in my child’s life! So I need more than “good.” If my child conquered a life-long fear or achieved something he has worked hard at for years I hope you want to celebrate it, too. But, I can’t celebrate something I know nothing about. This is why I ask. So please, take an extra minute and an extra breath (or two) and elaborate on what made my child’s day so “good.”

 

2.  Believe me.

Please don’t look at me as just another parent when I rattle on about what my child likes and doesn’t like. Because I am not just rattling. I am providing you with insight, tips and experienced tools of the trade that will not only make my child’s day run smoother, but yours, too. I’ve already learned if my child’s clothing gets a little bit wet from rain, food, paint or a water fountain, he will immediately strip them off no matter where he is at or who is around. I have already learned when he starts picking at the skin on his lips it’s a sign he is feeling overwhelmed and anxious and is on the verge of a meltdown. I have already learned he has a higher pain tolerance (which is not an uncommon trait for children with autism), and if he falls down on the playground and actual tears leave his eyes, there is a good chance he may have broken a bone. These are things I tell you because you need to know them. And don’t just listen to me, but believe me. My expertise may not come with college credits, but it comes from experiencing and learning all of these things the hard way so that you don’t have to.

3.  Ask! Ask! Ask!

Call, text, Facebook message, e-mail, Instagram, tweet or send a carrier pigeon. I don’t care, but please ask me for help if you need it. Don’t make it harder on yourself or my child for months about something I may have a solution to. I know it’s hard to ask for help, especially when it involves something you think as a teacher you should be able to solve on your own, but if your regular teaching methods aren’t working or you have tried every trick up your sleeve with no avail, I may be able to help you both. Asking me questions about my child is not a sign of weakness, it is the sign of a great teacher who cares about my child’s education. Just like you, I want my child to learn and grow while he’s at school. Please do not wait until both of you are frustrated with each other. Do not be the least bit hesitant in reaching out to me. It’s about how we can help my son together.

Just like you have a degree in teaching, I have a degree in my child. While my degree may not come rolled up in a scroll tied with a ribbon, it’s held together by a bond with my child I can only trust others will believe. It doesn’t contain a typed out script, its wording can only be said aloud if you take the time to listen. The degree I have in my child cannot be placed in a frame and hung on the wall, but it is on display every single day if you take the time to look. And it wasn’t placed in my hand by a school official, but rather given to me by someone much higher up who believed I would cherish him and nurture him beyond measure. So please trust in me, listen to me and hear me while I share the knowledge of my child with you because he is my greatest accomplishment. I hope by the end of the school year he will be yours, too.

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Target Adds Low-Cost Sensory-Friendly Clothing to Its Kids Line


Target’s line of kids’ clothing Cat and Jack is releasing a limited edition collection of sensory-friendly clothes designed by Stacey Monsen.

Read the full version of Target’s Cat & Jack Line Adds Sensory-Friendly Clothing.

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Target Adds Low-cost Sensory-friendly Clothing to Its Kids Line.

The line was designed in part by Stacey Monsen, a design director whose daughter is on the autism spectrum.

Items in the collection include shirts for girls and boys, and girls’ leggings.

All items feature heat-transferred labels in place of tags and flat seams.

Graphic tees have no embellishments and have one-dimensional designs to reduce irritation.

And leggings are easy to pull on with a higher rise to fit with diapers.

Sizes range from XS to XL and 2T to 5T, with prices from $4.50 To $7.

But before you run to the store, the collection is only available online.

While the collection is limited, target said it plans on adding adaptive clothing for kids with disabilities this fall.

 

“The Target team has immense passion and collective knowledge, and I love that we’re using it to develop products and solutions that will change people’s lives. My goal is to keep being an advocate, for my daughter and for others.” – Stacey Monsen

Woman in the grass wearing headphones.

Realizing My Sensory Issues Have Improved as Someone on the Autism Spectrum


As someone on the autism spectrum, I’ve had (and may always continue to have) sensory issues. The problem has always been present in some way, whether it be trying to find clothing that is comfortable enough to wear, or worrying that the bus passing by will be too loud and painful for me to hear.

Yet, I truly believe that as I’ve gotten older, my sensory issues have gotten a tiny bit better. This, along with increasing my ability to cope with the issues has shown that I’m able to handle a lot more than I used to!

For example, when I was a kid, I couldn’t wear a really popular brand of bathing suit because it was so tight and dug into my shoulders so much (even when it fit properly otherwise) that it bothered me. Not too long ago, I was trying on another one for the summer. It fit pretty well, and my old one was falling apart so I settled. I put it on again later, and noticed it was the same brand I couldn’t wear when I was younger! It was only after I noticed the brand name that I realized it was a little tight, but totally bearable.

The same thing has applied to some foods (I still have a lot of sensory issues, and this area has proven to be much more difficult), as well as things like noises and smells. I’m trying more and more foods that I never would have touched when I was younger, and I don’t always need to plug my ears when I hear a bus passing by. I still have many issues, but I’m dealing with them better and more appropriately the older I get.

My biggest tip is to be patient, and help the person to find these ways to cope. (It’s hard to find the strategies alone.) But don’t force the sensory discomfort! (This may make it too negative of an experience to try again in the future.) Allow the person to slowly experience it on their own. It has taken years, but it is getting better for me!

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Thinkstock photo by Anya Berkut.

Asian woman lying in bed wearing headphones.

A Day in My Life on the Autism Spectrum


Whenever I divulge my autism diagnosis to someone, it is usually replied with a puzzled look and the person exclaiming, “Really?” At first I was annoyed by it and a little offended, but now I laugh. I laugh because I feel free and I feel like my freedom is used to educate others. I’ve also educated myself on autism. It has helped me become self-aware.

No one has asked me what it is like being on the spectrum. I don’t mind the question and I’m not sure why no one has asked me. Maybe because I talk about it all the time that I already answer the questions. So, I have asked myself “Self, what is it like being on the spectrum, now you know that is what it is?”

For me, being on the spectrum is like being on a computer. I look nice, and presentable, just like any other computer. No one knows I’m any different. It isn’t until you start interacting with me that you notice I’m a bit slower than the other computers. All the other computers can handle several tasks at a fast pace, without freezing. My program takes a while to load, can only handle one task at a time, and if you attempt to make me multitask, I will freeze up, shut down, and will need to be restarted.

I have a few tips on how to avoid a meltdown that work for me. But I am also learning what exactly triggers me and sometimes meltdowns can’t be avoided. So, I will also give you some tips on what helps me calm down from a meltdown.

I should probably explain what a meltdown looks like for me. Just like autism itself, my meltdowns have a spectrum. Sometimes they are subtle and sometimes they are extreme. Usually in a subtle meltdown, I’m aware that I’m in a meltdown and can talk through it. When it is subtle, I just look like I’m in a bad mood. If needed, I can fake a smile but it looks forced. Body language will be off. If it’s too loud, I may cover my ears. A medium meltdown usually has some tears and snot. I’m not a pretty crier so it’s always snotty tears and loud sobs. Often times there will be yelling as well. A major/extreme meltdown, luckily, doesn’t happen often for me. I don’t really want to explain it because it’s embarrassing, but I’m trying to be honest. An extreme meltdown will have screaming, crying, rocking back and forth, and sometimes I end up under the bed or in a closet or something. Let’s not dwell on the bad times!

OK, so to avoid a meltdown, I have a few items on hand.

1. Ear plugs.

Life on the spectrum is loud. I have songs, conversations, and a plethora of other things going on in my head. So, my head is already loud enough as it is. I haven’t figured out why, but I’m also more sensitive to sounds. Environmental sounds are louder to me than they probably are to you. For instance, when I am at the grocery store, the radio is loud and it feels like it’s screaming in my ear, I can hear every single cash register beeping even if I’m across the store, the employees have radios on and talk to each other, people are being paged over the intercom, there’s a screaming child the next aisle over… you get the picture. I get physically exhausted by the time it is over. With ear plugs, I still hear everything but it is so much quieter and I can pay attention to my shopping list.

2. Fidget Tangle.

This toy is way more subtle than those fidget spinners. I use this tool mostly when I’m at church. Sacrament meeting is a quiet and gentle service and sometimes my mind wanders. I have a hard time keeping still and this tool allows me to get my wiggles out without being a distraction. It also helps me think more clearly and stay focused. You can find a fidget tangle here.

3. Walking.

My mind is always filled with thoughts and songs and conversations and I need to “walk it out.” Whenever I get information overload or am in a loud environment, I have to walk around. It helps clear my mind.

4. Say something.

Even if it’s just as simple as “I’m stressed out,” no one will know I need help unless I say something. Sometimes it’s easier to say something to someone I really trust, such as my husband. The reason being because I feel embarrassed by how little of a situation can make such a big complication for me.

5. Reusable grocery bags.

Yes, this silly thing has helped me avoid a meltdown. I cannot stand clutter. I will easily get stressed out and feel guilty after grocery shopping if I come home with a million plastic sacks or paper bags. Reusable bags don’t make that crunchy sound, and they are pretty stiff so I can look directly into the bag. Believe me, this subtle change in my life has become a tremendous miracle.

I’m still working on my list; it’s ever-changing and ever-growing. Some things need to be tweaked. Also, it’s important to note that no matter what tools you have on hand, sometimes the situation placed before you is a bigger issue than any reusable grocery bag can handle! Sometimes I have to face those meltdowns.

Right now I have found that routine is best when it comes to settling down.

1. I notice that the one thing that overwhelms me is clothing, accessories, and hair. I need to change into comfy clothes, take my jewelry out, and put my hair down or at least out of my face.

2. If I have time to shower or take a bath, I will do that. A lot of autistics say water physically hurts them and they can’t stand to take a bath or shower. That idea is totally foreign to me and I have an opposite experience. Water always takes the pain away, helps me focus, and is just nice.

3. Next, I go into a cool, dark room. If I’m at home I lay in bed. I also make sure to have some DoTerra Lavender Essential Oil in my diffuser. This stuff is amazing for a meltdown. I do straight lavender. I’ve noticed that using blends, such as Serenity, are too much of a sensory overload for me; I need to use just one, simple scent.

4. I love to utilize my library’s OverDrive app where I can either listen to audiobooks or read eBooks. Usually I listen to an audiobook when it comes to winding down. I also listen to something simple. Right now my go-to is anything by Janette Oke. Her books are conservative and a little cheesy but I find that simple and conservative help me when I’m dealing with a complicated issue.

5. I know that medication can be a good thing, and I am on it myself, but sometimes I like to go a more natural route sometimes. If I need a little more help to settle down, I use Calm. It is a magnesium supplement drink. It comes in different flavors or you can purchase it unflavored. My mom and I found a variety package at our local health food store so we could try all of the flavors offered. The flavor I like best is Raspberry-Lemon. It almost tastes like Crystal Lite. This drink settles me down and also makes me a bit sleepy.

6. Lastly, it’s important for me to get a lot of rest in recovering from a meltdown. I try to listen to my own body to determine how much rest I need. Sometimes it’s minutes, hours, or days. It can be super annoying, especially if I have things scheduled to do. But I know it is important to listen to my body and what it needs.

Before I was diagnosed, I was extremely embarrassed and ashamed of myself because I became overwhelmed easily and would shut down from the outside world. In the past, I shut out a whole sorority of girls when I was in college because I didn’t know how to handle the social aspect of being part of a sorority and the general drama of being around a huge bunch of girls. I wish I would have known then what I knew now about myself — I wouldn’t have closed off some good friendships I had going for me. However, I now know which signs to look for, and I mostly know how to handle myself before I go into meltdown mode.

Looking back, I wish I could fix mistakes I made, and in true Aspie fashion my mistakes give me anxiety today. But I now know myself, I laugh at myself, I learn from myself, and I try to move on to a bigger, better, brighter future.

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Thinkstock photo by Dragon Images.

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