becca lory I’m often asked what it felt like to get an autism diagnosis at age 36. As an active autism advocate, writer and public speaker, when I say often… I mean often.

struggled for a while with how exactly I could describe that moment. One day I realized I was struggling not because I didn’t have an answer, but rather because it wasn’t one single moment. It was a series of moments. There was the moment I first read about autism, the moment I decided to seek a diagnosis, the moment I began my evaluation, the moment I was told the test results, and, most importantly, the moment I first said it aloud about myself. I am autistic. But the one single word that ties all of those moments together is relief. Yes, relief.

I’d been told for as long as I can remember that I was stubborn, lazy, manipulative, overdramatic and mean. At the early age of 5 or 6, I had been to the first of countless psychologists and psychiatrists who would over the years label me as school phobic, social phobic, depressed and anxious. From my early teens on, I had been medicated for everything from panic disorder to manic depression to obsessive-compulsive disorder. Basically, I had spent a lifetime hearing that something was wrong with me and worse, believing to my deepest core that I was broken and unfixable. As soon as I stumbled upon what was then called Asperger syndrome, now Autism Spectrum Disorder (ASD), I knew my life would never be the same. What I didn’t know was how much better it could be. 

I remember the day I read about autism for the first time. I remember the day I began my evaluation. I remember the day I was told I officially belonged on the autism spectrum and I remember the day I first said aloud, “I am autistic.” What I remember about those days is both good and bad. None of it was easy. Yet along with each and every moment of that part of my journey, I evolved, I learned, I grew and I was relieved. 

I was not broken. I was not unfixable. I was not a lost cause. And most of all, I was not alone. 

It turns out there are a lot of us who have survived decades without the skill sets we require, without having our needs addressed, without the proper vocabulary to describe what is happening in our brains and bodies, and without knowing why the world feels so much like an alien planet. But I am one of the lucky ones. I know now. I can adapt to my needs, face my challenges and enjoy my gifts. I even get to share my experiences and educate others about what it is like to process the world through a unique filter. I am part of an incredibly supportive and loving community that we call the spectrum. And it is a relief. Being able to love yourself for exactly who you are is a relief. Having others love you for it too is an even bigger relief.

I am a woman. I am an adult. I am autistic. And I am proud!

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Dear Susan Boyle,

To have a high public profile where your movements and vulnerabilities are recorded must be so difficult to handle. It was with sadness we read firstly of your meltdown at Heathrow Airport and then later, a report that you felt the need to apologize. A meltdown is the result of an unmet need and can leave us feeling very drained and (unjustified) remorse, embarrassment and upset. This is very different from an outburst, a tantrum, of which we have some level of control to manage and may need to reflect and apologize.

Autistic people live in a world not designed for how we experience it, for the way we relate to others and the way we naturally communicate. Every time we walk outside our door, we make reasonable adjustments for others without autism, who are in the majority. The negative messages we receive are that non-autistic people are the skilled communicators, that they are the ones who have empathy and unfortunately they, as the majority, hold the power to make the decisions to include us and about the policies that affect us. Autistic rights, our way of being, are seldom recognized — often unless we are male children with the voices of non-autistic parents and parent-led charities speaking over us and for us. As you experienced, this world we often collide with has little understanding of autism as it manifests in an adult female form. As a woman with special needs managing these situations alone, it can be frightening.

Many autistic people have been to airports. The bright fluorescent lights that can blind us. The anticipation of where we are going and the change that trip means to our usual routines. The passing through security, requiring undressing of shoes, belts, coats and the brief separation from the electronic gadgets that are our connection to our online communities and peer support networks. The body contact and touch of security people. The anxious wait, checking electronic boards to know which gate our plane will depart from and the inevitable rush of people and their bags to jostle for position in lines. The enclosed space of an airplane and the women who surely must have bathed in perfume from the way it fills our senses and turns our stomachs. The closeness of strange males near us, which for many of us, can be a trigger to incidents from the past.

Susan, you found yourself in a situation where your system was assaulted by an onslaught of stimuli too overwhelming to process and manage alone — a feeling your autistic peers know all too well. For some of us, we silently bear it, we shut down. For some of us, we panic and look for ways to escape. For some of us, we get mouthy, and that is seen to be aggressive and rude.

I hope that the advisors around you understand that an apology as a form of damage control is not warranted. You cannot help the way you are. It is not a choice, it is how we as autistic people are programmed. Buildings and airports and public places do have a choice, they can decide if their spaces will be inclusive of us or not. Your experience has the potential to teach Heathrow Airport to do better by you and by the autistic people that pass through their terminals.

If you feel you need to apologize, I hope you have loving support around you. I hope those people are telling you, you did the best you could do in that moment. That you are OK. That they will help you to identify your own triggers so future distress can be minimized. We live in hope to see examples of the empathy and great communication skills of the non-autistic world while waiting for them to meet us at least half way. Because having autism, and having your needs unmet, is not a reason to write a letter of apology.

Loving support from,

Your friends at Autism Women Matter

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“Normal” is such a weird word. To me, it has connotations of boring, unexciting, run-of-the-mill. I would never want to be referred to as “normal” — I feel it is bland, safe and average. But “normal” can also mean the center, the equilibrium, the thing that always happens, nothing bad, nothing too extreme, just the everyday stuff that goes on. I always felt that “normal” was some badge of acceptance, that you have managed to achieve a middling level of human ability; you were not odd, you were not different, you did not stand out, and in my naive young mind, I thought that everyone’s “normal” was the same. That everyone was striving to be the same “normal,” that we were all connected to a collective brain that pulled and pushed us to conform. That there was a “normal” ideal that we were all striving for, and any deviation from this goal was wrong.

The day our daughter was diagnosed with autism spectrum disorder will forever be etched in my memory, a date in the diary that will ping with recollection as each year goes by — but I will also remember one key phrase the consultant uttered. This phrase was like an illuminated neon sign in a sea of muted words, ideas, strategies and diagnoses that would require many weeks and months for them to be truly understood. That simple, life-changing phrase was: “Your normal will not be anyone else’s normal.”

In those eight words, he summed up a mantra by which I can live, subtly confident in our own abilities, suggesting that molds would be broken, rulebooks rewritten and our own furrow ploughed. It was the light-bulb moment that no, what is “normal” for us is most definitely not “normal” for others. And guess what, there is nothing wrong with that (if only I could go back in time and tell my teenaged self that). He was basically telling us that the way in which we do things to accommodate the strengths and challenges of our wonderful girl on a minute-by-minute basis will most definitely set us apart from how other people behave. From letting her eat vegetables first, then protein, then carbs, ensuring there is exactly half a teaspoon of hot chocolate powder on top of the hot chocolate, to our “in” and “out” trays for homework, to the visualization of a venue we have never visited before, to the bedtime routine that may seem odd to others, that is our “normal.” Our “normal” suits us; it has been lovingly crafted, put to the test many times, reworked, adjusted and continually tweaked. Our “normal” is what works for us, and I couldn’t give a monkey’s if it is seen as “abnormal” by others. I’m pretty sure their “normal” would seem “abnormal” to us. For the first time in my life I can safely say that I’m happy with “normal.”

Follow this journey on Coloring Outside The Lines.

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My son was running away from me in the supermarket again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park, I noticed a stranger was gently holding his shoulder.

“Is he yours?” she asked as she saw the sweat appear on my forehead.

“Yes,” I puffed as I once again held his wrists.

“He has autism and he is heading right for the car park lift. Thanks for your support.”

“I knew right away he had autism. You can tell.”

If I was given just a small amount of money each time someone told me something similar, I would be rich.

So what makes his difficulties and diagnosis so obvious?

Is it the fact he flaps and stims constantly? I really mean constantly — he cannot seem to sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is difficult not to notice. His body movements are not hidden.

Is it the fact he cannot talk? That may seem like something you would think would not be noticeable, but the noises he does make are noises most people probably don’t hear every day. His noises are not hidden.

Is it the fact that he screams? He can scream longer than a fire alarm and more high-pitched that a whistle. He screams randomly and whenever he feels like it. There is nothing hidden about that.

He runs, he flaps, he has learning difficulties, and he behaves quite differently from other children his age. He is sometimes in a wheelchair for his own safety, and if I have not got the energy to run a marathon while doing my shopping, then I often use a disabled trolley for convenience.

He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He can be entertained for hours just watching lift doors open and close and open and close over and over again.

He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either.

People see him and people see his autism.

Sometimes they don’t react very well to that. Other times, like the beautiful stranger tonight, they see a child with obvious difficulties and look out for him.

They comment, they look and they react because my child has challenges that are not difficult to see. I understand that some people can “hide” their challenges, but that isn’t true for everyone.

Sometimes though, the fact it is not hidden brings me into contact with some truly amazing people. My son may not hide his autism, and thankfully there are many people in the world who chose not to hide their love and kindness, too. To the stranger in the supermarket, and the hundreds of other wonderful people who see me and smile, support and help — thank you!

young boy sitting on bus looking out window
Miriam’s son.

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ryan smiling on a baseball field During the month of April, autism is talked about, debated over and sensationalized more than the other 11 months of the year combined, so it stands to reason if you write a blog about autism you are going to hear more from people who have autistic children. They want to compare notes, celebrate progress, cry over setbacks, but mostly, share with someone who “gets it.”

One such parent and I were swapping stories, sharing the good times and the bad. It was nice. It felt comfortable. It felt welcoming. Until it didn’t.

It got colder. It got weird. It got less welcoming. The change was subtle, but I recognized it because I have felt it before. “Ryan is not in the autistic support classroom. He is mainstreamed.” It was a statement, not a brag, not a contest. I was asked, and I answered.

I have seen this change before in other faces of parents loving a child with autism. The expression falls somewhere between disappointment, jealousy, sadness, betrayal to maybe even a little indignation. The face, especially if it belongs to someone whose child is in fact in the autistic support classroom, says, “He is not autistic enough.”

Just like the thousands of people who fall somewhere on the wide expanse known as the autism spectrum, there are equally as many family members who are trying to come to grasp with this diagnosis falling somewhere on the wide spectrum of acceptance. Like on any spectrum, some parents fall on one end while others fall at the other, with tons of parents falling somewhere in between. Much of this may have to do with where their child falls on the autism spectrum, how much time they have had to process their child’s diagnosis and where they stand in their relationships with the friends who seem to enter all autistic parents social circles, Denial and Acceptance.

Prior to knowing a child has autism, when we parents are in that “I wonder if…” stage, we are constantly comparing our child to their siblings, their classmates, their neighbors. Then once the autism diagnosis comes, the comparisons tend to switch from neurotypical kids to other kids with autism. It seems more “fair,” and I totally get it.

We talk with other parents at therapy appointments, at social skills groups, and we consume all we can online about other kids and adults with autism. There is honestly a sense of relief when we read a story online about a child who seems “worse off” than our own. “Well at least my kid can ____,” or “At least my kid doesn’t ____.” I get it because it is hard when a child is “different” so it helps to know that in some realms, those differences aren’t quite as different as others.

Although all autistic people have strengths and deficits, some deficits are much more profound. I understand that a mother whose child has seizures, is non-verbal and unable to be toilet trained has a much different life than my son and me, and while I am empathetic to their struggles, I should never be made to feel “guilty.” My son struggling with how and where to fit in and accepting that he is “different” than most of his classmates is much different than another mother’s son who is unable to communicate his basic needs. To say any one of them are “better” or “worse” feels like apples and oranges. Why compare an apple to an orange in the first place? Even though they may both be fruits, how they look, the way they grow, the climate they thrive in, are very different.

Yet we do it because we are human. I have a wonderful friend who is in my “gets it” club. Her son and Ryan are the same age, and they both have autism. We don’t compare the exact location of where our boys fall on the autism spectrum, but we seem to both be in a similar place on the acceptance spectrum. Sure, we compare notes and often find ourselves amazed by our sons’ unique yet similar differences, but mostly we support each other. We celebrate our boys’ successes and commiserate the days and moments that they struggle and the days and moments that we struggle. I have shed tears over her son’s successes and struggles as she has Ryan’s. We don’t think about which one of our boy’s is “more autistic.” We celebrate them for exactly who they are and confide in one another as we wonder one day who they will be. Yes, we compare, but mostly we share… with understanding, compassion and support.

I once was speaking at an event for mothers of children with varying disabilities. One mother whose daughter was nonverbal, in a wheelchair and on a ventilator told me a friend with an autistic child explains that she feels “guilty” when she complains about her child’s struggles since this mother whose child may never walk, talk or breath on her own had things so much “worse.” This mother looked at me with love and understanding and said, “I tell her there is no need to feel bad.Her child has autism and wanders away. I am grateful knowing I don’t have to worry about my child wandering and getting lost or hurt.” Apples. Oranges.

Regardless of the degree of differences in abilities and disabilities in autism, we should never be made to feel bad or guilty for our child’s progress. They have worked so hard to get where they are, and their progress has nothing to do with anyone but themselves. Ryan does not look at someone with autism who is nonverbal and uses an iPad to communicate as being “worse” than him. Ryan sees a different way to communicate. Ryan does not believe he is “better” than a classmate in the autistic support classroom. He sees a student who learns better with more support. Ryan does not believe that he is “more autistic” than another autistic friend who is much more social than him. Ryan sees a friend who just likes to chit chat while he does not. This is not because Ryan is hugely empathetic and extraordinarily kind. He just knows that his progress, his struggles has nothing to do with anyone but him. As parents, we can learn from this… no matter where we fall on the spectrum of acceptance.

Ryan may be verbal, mainstreamed and blessed with the gift of perfect pitch, but he is lonely, anxious and recognizes that he is “different.” He is not “better off,” he is not “worse” than other autistic kids. Ryan has strengths and deficits and where he falls on the autism spectrum is his place, his spot and he should never be made to feel badly about this spot he has been placed on, and as his mother, neither should I. There should be no judgment of what makes someone “autistic enough” any more than parents should be judged on what makes them “accepting enough.”

Ryan is smart. Ryan is funny. Ryan is compassionate. Ryan is musically gifted. Ryan is lonely. Ryan is anxious. Ryan is progressing. Ryan is struggling. Ryan is autistic. Ryan is Ryan, and that is enough.

Regardless of where we as parents loving a child with autism fall on the spectrum of acceptance, when we preach and advocate that autistic individuals are “different, not less” than neurotypicals, we need to keep that in mind within the autism community as well.

​Enough is enough.

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I have heard some real corkers over my years and sadly been privy to what other parents have had to listen to. Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say — with my responses next to them.

1. “Have you tried giving the Paleo diet a go?” — Why?

2. “My nephew had autism, but he grew out of it.” — Autism isn’t something you can grow out of.

3. “But she looks so normal.” — So what does autism look like, to you?

4. “Maybe she’s just attention seeking.” — In which case, there would still be an underlying cause as to why.

5. “But her eye contact is so good!” — Autistic people can have good eye contact — it is a myth to assume it’s impossible.

6. “Are you sure?” — No, I just make this stuff up to make myself feel good.

7. “But she’s so social!” — Autistic girls can be really social, and people who are autistic can also really enjoy the company of others. They may just tire immensely afterwards.

8. “But all kids do that!” — But do they do it all day, every day?

9. “Everyone is a little bit autistic!” — No. You can’t be a little bit autistic. The diagnostic criteria is long and complex; you are or you are not.

10. “If that is what autism looks like then maybe I am autistic, too!” — Hmm.. Well, maybe you are?

11. “I’m so sorry.” — Why, what did you do?

12. “Why does every child need a label these days?” — Because labels or diagnoses can help struggling children gain support, and they can also help in educating others and raising acceptance for neurodiversity.

13. “She’ll eat when she’s hungry.” — Except she won’t. Because autistic food issues are driven by anxiety and sensory issues, and children on the spectrum may starve themselves if they don’t have access to the food they will eat alongside food that is new to them.

14. “Didn’t Rain Man have autism?” — *Face palm.*

15. “But she doesn’t behave like that around me.” — She may be keeping it together around you because she doesn’t feel comfortable letting it out when you’re around. It is well-known that girls on the spectrum rarely ever melt down at school or kindergarten, and mostly always only around their trusted inner-circle.

So what should you say, instead? Well, how about:

“Wow, you’re a great mom!”

“I hope you take a breather for yourself later.”

“Let’s have a cup of tea and a chat sometime.”

“Your daughter is really lucky to have you as her advocate.”

“She’s an amazing little person, isn’t she?”

“Hello. What are you up to today?”

“I’d love to learn more. What can you tell me?

And finally:

“Here’s the cider/wine/chocolate.”

Remember people, autistic children are human beings — every judgment you make about them, in front of them, they are listening to. They think and feel things just as everyone else does, sometimes they can just feel them in different ways. Every mother of an autistic child can spend a great percentage of every day of her life advocating for her child, and if it isn’t apparent to you that the child is autistic — that might just show you how hard everyone is working together to make the life of the child fuller, easier and happier all around.

If in doubt, simply be kind.

a young girl sitting on her fathers lap on a sandy beach
Jessica’s husband and daughter.

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