I follow a lot of blogs and have noticed they all differ on how they decide to show the world what their lives are like with autism. We all want to spread awareness for autism — I know that for a fact. We want inclusion for our children, we want needed services for our children and we want the same rights for your children and our children.
Still, my child with autism is very young, and I feel like we’ve just arrived in a “new land.”
Parents with older kids or adult children on the spectrum have definitely paved the way for “newbie” parents like myself. I wouldn’t know half of what I know if it weren’t for them. And what I didn’t learn from them,I learned from people with autism themselves.
I can still remember the emotions I felt after getting my child’s diagnosis. I also know what it’s like to want answers from professionals and not get them and to be sent on my way to this new land.
I just want to learn as much as I can, so I can set my child up to one day live alone in this land.
When I got here, I wanted to be accepted and taken in right away. But just like a new kid at school, not everyone accepts you. I get that. It’s OK, but I sure as hell will teach my child that if she wants acceptance in this land, she has to accept all others here, too.
In this land, there are differences of quirks, stims and, most of all, there are differences in opinions. Isn’t that what makes life in this land great?
Our life with autism might not be like your life with autism, but it’s not uncommon to find someone in our community who we can relate to. Whether your child is younger, older, a girl, a boy, or whether you’re a parent, a self-advocate or advocating for a loved one, we all live here!
In this land, your house may be bigger, and you may have more friends at your parties. And if that’s the case, good for you. You’ve done well for yourself.
My daughter Laila recently turned 3 years old and has been diagnosed on the autism spectrum all in the same month. There are many changes happening to our household and her life following the diagnosis. The biggest one is that she will be starting a special education preschool program in the fall.
Laila has stayed home with me for the past three years. Together we have had our share of dancing, snacks and Disney princess movies. When I started noticing delays in her development, she entered early intervention through our county’s public school system. She received speech and occupational therapy on a weekly basis at home. School is going to be a big deal, and as excited as I am for her to experience new things, as an parent of a child on the autism spectrum, I can’t help but worry and wonder about so many things.
She is mostly nonverbal, she hasn’t had friends yet and she is not potty-trained. So my fellow parents, I would like to share with you five things my family is doing to prepare her for the start of the school year in the hopes that we can all start a conversation full of ideas, tips and support for all our little ones embarking on this new adventure.
Laila’s speech therapist printed out a PECS (picture exchange communication system) picture of school for her. She was in a transitional group where she was learning what school was all about, and she carried her PECS card to and from the classroom. Her father and I repeated the word “school” to her over and over again. We still look at the card on a daily basis, and I repeat the sentence “Laila is going to go to school.” I point out school and classrooms on TV shows and in movies, and we have been reading plenty of books about school and preschool. I’m never sure how much she understands, but I know it’s a step in making her more comfortable once the big day arrives.
2. Point out school buses.
A school bus will be picking up my daughter and taking her to and from school. I’ve tried pointing out school buses on the road to her as we see them drive by. My local elementary school holds summer classes, and we will be taking a walk to see the school buses before classes start. I figure, the more comfortable she gets with these new things, the easier the transition will be. At least, that is my hope!
Potty-training a nonverbal child on the autism spectrum can be tough. Her preschool will help in potty-training. We talk about potty-training, and we try to get her to sit on her potty from time to time, but I don’t pressure her to. It’s all about making her comfortable with the concept of it.
4. Meet the teachers.
I am lucky to live in a county where my daughter’s preschool teachers will be making home visits to our household in order to get to know her better. I want to tell them so much about my daughter and who she is as a human being. They will get a chance to see her in her home environment. I suggest my fellow parents make an effort to attend back-to-school nights or meet-and-greets with the teachers. Even if it’s just introducing yourself on the first day of school, your heart will be set at ease knowing you’ve met the person who is in charge of your child throughout the day.
This is always easier said than done, but I am going to print out a simple schedule with visual cues so she may get used to following one. Wake-up time, breakfast time, play time, snack time, reading time, etc. Make one that is best for your child’s day at home. She will have to follow a similar one at school, so I figured consistency between school and home will help her the most.
Good luck to everyone, and good luck to our little ones starting this great, new adventure. May this school year be full of growth and learning!
One day, a kindergarten teacher was walking around her class, checking in on her students to see how they were progressing on their art assignment. Pleased with what she was seeing, she continued to move about the room, slowly pacing by each child’s desk, periodically pausing and offering words of praise and affirmation to her young pupils. She rounded the corner towards the back of her classroom and as she approached young Sarah, she saw what looked to be the beginning stages of an interesting art project.
The teacher leaned over to get a closer look at Sarah’s picture. When she was unable to discern what the picture was, she said to her, “Sarah, that’s an interesting picture, what are you drawing?” Without looking up, Sarah replied, “I’m drawing a picture of God!” Stunned for a brief moment, the teacher chuckled and said to Sarah, “Oh honey, no one really knows what God looks like.” Without so much of a flinch of confusion, Sarah confidently replied, “They will when I’m done with my picture!”
I believe the best pictures of the divine sometimes come from what some people would consider the most unlikely of sources. As a pastor and public speaker, I can testify to the importance of storytelling as one of the most powerful forms of art. The ability to weave words together to create a tapestry of images that inspire the mind and stir the soul is indeed artistic — and it is actually my autism that has given me this precious gift. My advocacy is my art, autism is my canvas and my work is to inspire people to experience the divine in the most unlikely of sources and in some of the most unlikely spaces.
For me, autism self-advocacy is an art form aimed at accentuating the beauty found in our humanity. Autism awareness and acceptance should be about expanding people’s exposure to the life of autistic people. That can’t be done with statistics; it can only be done with the art of telling stories.
1. Share the sacred.
The best pictures of the divine are painted on the canvas of the deepest and most sacred places of our hearts. Sacred is whatever is separated for a special purpose. My routines, my repetitive behavior, my sensory processing issues are all sacred spaces that serve a special purpose. They are more than “quirks” — they are what makes me complete. When you share what’s sacred to you, it has a way of painting a picture of a person who isn’t flawed or broken, but rather one who is filled with faith, hope, and strength.
Life is art. Every part of it. There are no moments in life that have no meaning, even the bad ones. Autism comes with its share of struggles, but all art is the process of creating beauty from ashes. The art of storytelling includes sharing your struggles so that others can be inspired to survive theirs. Your struggles give credence to your creativity as an artist, so never be afraid to allow your art to be created from places where you may feel conflicted.
3. Share your suspicions.
True art questions. True art critiques. True art combines the gifts of critical observation with the power of curious optimism. When you share your story, create the type of art that challenges the world to challenge itself by questioning itself, critiquing itself, and developing the type of curiosity that both demands and inspires change.
4. Share your strengths.
I believe the art of story telling requires faith. Art requires faith because it creates beauty from places where nothing beautiful exists. The goal and the role of both faith and art has never been safety. The role of art and faith is courage. Living with autism is living with strength, passion, and perseverance. Your story is a story of strength and skill that is so profound and powerful that it is artistic. You are not limited, and you are not a liability. You are strong, so share your strength with the world.
Good art captures the eyes. Great art captures the ears. Telling your story doesn’t just ask for attention, telling your story can ask for adjustments. Your story is so incredibly valuable to the world that it serves as a voice. Your story, your art, and your voice deserves to be taken seriously, and with that responsibility comes the responsibility to offer your solutions and your suggestions for ways that the world can be a better place for the autism community.
Every day I have to function in two different realities. There is my everyday reality. It is a world full of deadlines, schedules, and demands. It is loud and confusing. There are so many rules, and very few of them actually make any sense.
Then there is my native reality. It is the place where everything comes easy. In this reality people can communicate without any language and still understand each other. Here everyone is smart, even if it isn’t apparent. However, it is a place I only get to visit, to retreat to when I have no other demands or if the world gets to be so much that I just cannot take it anymore.
I think this is why many individuals with autism say autism is good and it is the world that has the problem. I have a different perspective. My perspective is unique because I see autism from so many different angles.
I am autistic. I know what it is like to grow up unable to communicate to the world. I understand the inability to vocalize what is in my head. I was bullied, misunderstood, and spent my childhood not fitting into any mold.
I am also the mother of two children on the spectrum. I have a teenage son and a pre-teen daughter who both have Asperger’s and ADHD. I have navigated the world of autism as both a mother of a boy and a girl on the spectrum. They are two very different worlds.
I also have a professional background in autism. I have a BA in psychology and an MS in Applied Developmental Psychology. I finished my master’s with a thesis on autism and continued on to work as an ABA therapist helping children with autism.
I do not believe autism is bad, but I also do not believe it is realistic to expect the world to change for individuals with autism. I love the autism world. I love escaping into my obsession. It is peaceful and easy. I do not have to work hard to interact with other individuals with autism. We speak the same language – the language of autism. I have on many occasions “translated” for children with autism to their neurotypical parents and/or teachers. It is a language I know how to read without trying. It is my language.
Yet it is not the world I get to live in. The reality is I have to navigate the neurotypical world to provide for my children. I have to advocate for their needs. I had to obtain an education and get a job. I cannot walk out of my job because of social interactions. I have to live in the neurotypical world even if it is not my native world.
I would not give up being autistic. I see the world in a way that is different from my neurotypical peers. It helps to manage the complex nature of my job. I also do not think I could have the patience to raise my children if I was not autistic. I have the understanding to know what they are experiencing, as well as the ability to not react until a situation has passed. This skill has grown as I have aged, but it is a skill that comes with being autistic.
Yet what I wouldn’t give to be able to go one day without having to work at everything. I would love to have something come easily. I would love to not have to talk through every interaction to see where I screwed up and why the other person is looking at me like they do not understand me at all (or maybe I am just reading them wrong… again).
Then there is seeing my children struggle. Being autistic and an adult is hard. Being autistic and a child is next to impossible. Everyone expects you to function like you are neurotypical (even if they know you are not), yet you do not have the skills to do so.
I think the autistic community has a lot in common with the Deaf community, in terms of culture. In both cultures you can be the only member of your family that belongs to the community. It can leave you even more alone and isolated. You have to weave in and out of cultures wondering where you truly belong, or if you belong anywhere.
If you had told me two months ago I would be writing today about how my daughter has autism, I would say that couldn’t be true. I didn’t see it two months ago.
I still didn’t see it in April when her developmental pediatrician pointed out the signs as he wrote in his book and watched her play. But when he ended his interview with how he felt certain my daughter was on the spectrum, I felt myself become numb. Suddenly, all the sound disappeared from the room and I could hear my heart beating in my ears.
Then I found myself becoming quietly angry with him while he casually pointed out how she wasn’t making eye contact with us — how she kept crashing toy cars and knocking over block towers but couldn’t replicate a block tower herself. How she knew all of her shapes, colors and every picture on every flash card but couldn’t respond appropriately to simple directions. How she repeated phrases over and over again to communicate but couldn’t answer a yes-or-no question. She couldn’t hold a back-and-forth conversation. She never asked questions. She never used pronouns. She flapped her hands and walks and runs haphazardly.
What bothered me the most about this diagnosis was not the 15 hours a week of early intervention therapy, having to fill out the mountains of paperwork to enroll her and begin her IEP for school, meeting with liaisons and case workers, or even that we didn’t know what the future might hold for her. It was that suddenly the very things I loved about my daughter, all the things I felt made her unique and beautiful, were now “symptoms” of a “disorder.”
The pediatrician wasn’t seeing her how I did. He didn’t see that, although she didn’t or couldn’t replicate his three-block structure, she can build whole Lego cities more intricate and creative than anything I would think to build, and certainly more creative than anything pictured in the directions.
He didn’t see that although she became easily frustrated, she is so spirited in a way I never was. I’ve always reveled in how she is so unlike myself. I was so shy and had trouble making friends when I was younger.
She might not say “Hi” and properly introduce herself to other children or ask them their names, but the doctor couldn’t see the pure joy on her face when she runs up to them and tries to make their acquaintance non-verbally by hopping up and down and smiling and squealing 2 inches from their faces. I love that she sees the world in her own way and seems oblivious to the fact that she operates on a different wavelength than all the other kids around her. Some kids seem to fear her, some watch her as if they think she is a curiosity and others are game to join her.
He didn’t see that although she doesn’t make eye contact with us very much, when her eyes do find mine, her whole face lights up and she laughs like it is the funniest thing in the whole world. He didn’t see how she grabs my face, brings my face to hers and squeals as if she’s bringing me into her world with her two tiny hands.
I fought mentally against my daughter’s autism spectrum disorder diagnosis because I hated the idea of stifling her uniqueness with labels. It wasn’t until three days after the visit to the pediatrician — when we were in the line at Michaels craft store and I was trying to pick up the materials for her tutu skirt for her 3rd birthday party — that I began to understand why we needed this diagnosis. In the checkout line, she became lost in yet another meltdown, seemingly out of nowhere, and I had to hold her in my arms while she kicked and hit me and tried to throw herself on the ground. I couldn’t console her and I couldn’t calm her down so I had to wait patiently for the moment to pass, while on the inside I was panicking. I was fighting back tears, while I felt everyone’s eyes, from the cashiers to the other people in line, staring and whispering.
It’s taken me a long time to get to where I am in accepting the initial diagnosis, and I know we still have a long road ahead, both in learning how to be her best advocate and in navigating this new world post-diagnosis. I still find myself constantly analyzing her behavior.
The more I analyze, the more I am finding I don’t really care anymore. The diagnosis is important because it ensures we will learn how to give her the tools to be successful so she can carve out the life she wants for herself, just like any other parent with a child on or off the spectrum. And although I have no idea what the future will bring, I do know that she will have the life she wants for herself, whatever life that will look like. Because she is more than the sum of her “symptoms,” and no diagnosis will change her or define her.
The knowledge that “different is brilliant” is one of the most liberating and positive feelings our family has experienced since our daughter was diagnosed with autism at 2 years old. Iris barely communicated, socialized or even looked at us. She was obsessive, had sensory issues, hardly ever slept and found other children deeply disturbing. I had to fight through the darkness, wanting to conform, struggling in a world our daughter didn’t fit into and surrounded by people who didn’t understand her.
Now, four years on, everything has changed, and it all started with one crucial piece of the puzzle: learning to follow Iris, abandoning the idea of trying to be ‘normal’ and embracing her differences.
After many therapies, we found there was one place where Iris was always free and happy, and that was out in nature. We tried equine therapy at a Horse Boy center, and although a love of horses wasn’t there at that time, it was evident she had an intense interest in the forest, the light and colors that surrounded us. She was totally engaged as I rode with her through the avenue of trees, her fingers outstretched and moving in the breeze, her body relaxed against mine in the saddle. We discovered with Iris, the more time we spent outdoors, the better.
Later that year, we discovered Iris’ love of painting and began leaving her table and painting kit out in the kitchen or garden to use whenever she needed it. Over a year, she created more than 50 extraordinary impressionist-style paintings that caught the attention of art collectors worldwide. Iris became a famous child artists, inspiring families to look past their child’s diagnosis and to see their potential, shining a light on autism. To me, the most exquisite part is how her demeanor changes as she paints. She is more open and started to talk.
In 2014, we brought home a Maine Coon cat called Thula, who became our second breakthrough. Thula showed me the way, proving time and time again how different was truly brilliant. Unlike any cat I have ever known, she takes baths with Iris, settles her down in the evenings and even rides along on our bike rides. But I like to think the bond Iris and Thula have isn’t a phenomenon that can’t be replicated. Many children with disabilities can benefit from having a pet in their lives. Sure, that pet may not be a Thula – a swimming, biking, boating super-nanny cat – but they will provide so much joy and ultimately help the child progress.
I have asked myself many times if any child could be like Iris, whether every child has hidden passions and skills waiting to be developed, encouraged and set free. I believe it’s true. We home educate Iris because it was what suited her – a flexible, organic approach focusing on her own interests. She is free to move and play, and I develop lesson plans where the motivation is intrinsic within the activity. She is self-motivated and keen to learn.
I have shared our story in my first book, “Iris Grace.” It’s a celebration of how “different is brilliant” and of the achievements of our little girl and her faithful best buddy. It documents the journey from the darker days, through her diagnosis to us learning how to connect with her and discovering her voice. I wanted to raise awareness for autism and what it is like to live with autism, but also to show people that there can be a future, and a bright one. I believe that there is always a key – it is about following the lead of your child.
Now I am embarking on a new and very exciting project called Kids Must Move with two pioneering authors, Rupert Isaacson and Kristine Barnett, who have inspired me in the past. It’s an online course that enables parents and teachers to effectively teach children on the autistic spectrum (or any child, for that matter) in a stress-free way, using movement and nature and following the child’s interests.
When Rupert explained the “Movement Method” his team had been developing for the past 10 years, it was a revelation to me. Their methods echoed mine, and I found all the things I know work with Iris were in this course. At last, I knew the science behind why what I was doing was working so well with her. After finishing the course myself, I wanted to join Rupert and Kristine’s team and be a part of this incredible new movement in autism that we believe will change so many lives.
I will be running the U.K. Movement Method Center from my home in Leicestershire, England. We will be offering training to parents, teachers, workshops, activity days, talks and outreach to schools.
We operate on the principle that children on the spectrum and children with neurological differences can learn, succeed and thrive. They can grow up to have jobs, careers and love; relegating them to the margins of society robs us of some of our best human resources. We embrace who these children are, and do not try to coerce them into being something they are not. We believe in what’s within each child, and in working with their strengths and interests in an environment that suits them. We follow them.