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10 Things I Wish I Knew Right After My Child's Autism Diagnosis

Receiving an autism diagnosis for your child can be life-changing. Even if you already think your child might be on the autism spectrum, actually hearing a qualified medical professional say those words might make everything move in slow motion for a second or two. In my experience, the words reverberated around inside my head. Autism. Autistic. My child is autistic.

And then the questions begin. Only by then, there’s no one to ask. We were given a few leaflets and websites and sent on our merry way, blinking into the rising sun of the dawn of our new lives. We had questions about how this would affect her schooling, how it might hinder her speech development (already delayed, but offered no extra help with it), and who could we speak to if we had any more questions. We never really got the answers to these.

But, the answers I really wanted to know were more personal. How will it affect her future? Will it change us as a family? How will we cope? We’re only around 20 months into our post-diagnosis journey, but if I’d have known then what I know now, it might have just seemed a little less daunting. Here is a list of things I wish I’d known right back at the start…

1. It will be OK! I would have loved someone to tell me this in those first few minutes. I probably wouldn’t have believed them at that moment, but to know that it had been said and to be able to pluck it from my memory when needed would have been useful. It can take time to come to terms with a new diagnosis, but, for all the ups and downs that might happen, it will be OK. It’s nothing to be scared of. When you stop to think about it, it’s words on a piece of paper. Use those words to make you stronger. Use those words to get the things your child needs. Be empowered.

2. Making decisions might get harder. I’ve always been useless at making decisions; I’m a real fence-sitter. I am always trying to second-guess myself and others, and I’m not good at trusting my gut instinct. Now I have a child with additional needs, I find making important decisions even harder. Choosing the right school? It’s not just about inspection reports and a “nice atmosphere” like when we were looking for our son. Now we have to consider facilities, therapies, suitability to meet her needs, what support they can offer… the list is extensive. Decisions made for a child with special needs are often big ones and can be hard to change if it doesn’t feel right. Lists of pros and cons have become my friends!

3. The diagnosis is not a magic key. People often say that having a diagnosis is the key to getting support and services for your child. Yes, having those words written on official-looking documentation means that there are more options open to you, but you might still have to fight to get these at times. Diagnoses are increasing, but funding isn’t necessarily increasing. Service providers are limited in exactly what they can give, and several families will be fighting for attention. Waiting times are long, appointments scarce, therapies lacking. You will need to shout, and shout loud.

4. I’ve learned more about me. I used to think parents of kids with special needs were superheroes. And they are. But, guess what? They’re just parents, doing what parents are meant to do. They take care of their kids. They do everything parents of “typical” kids do, albeit in a different way, more often than not. Feeding might be through a tube rather than on a plate; potty training might come a few years later than the “norm”; the sleepless nights may well continue well past the baby stage (and may never end!); schooling may be at home; socializing might be in special group settings… Some children need constant care, 24/7 and their parents just get on with it, because, well, what else can they do? And I have learned that I can do this. Even in the times when it feels as though I can’t, I can! I have amazed myself with my resilience at times. I am growing a thicker skin and a louder voice, because we have to make ourselves heard.

5. How fiercely protective I am. I always have been and always will be protective of my kids. But now I am a Mama Bear. Mess with my kids, you mess with me. ‘Nuff said.

6. My daughter will still grow and change. Yes, some things might be delayed, or maybe not happen at all, but she will carry on growing and developing, just as other children will. Her personality will develop, and I believe she will continue developing a great sense of humor and continue being loving, affectionate, and at times demanding. Because guess what? She’s a kid!

7. I wish I had known just how loved she would be, not just by our own family, but by others — teachers, friends, other children. One of my first thoughts was that she might never make friends and, while it seems to me like she might not understand the concept of friendship yet, I just know that eventually, she’ll be just fine.

8. I’ll find new friends. Before diagnosis, you might know one or two other people who have a child on the spectrum. But once you start looking, there’s a whole other world of people in the same boat out there. I find being sociable quite tricky, but I’ve forced myself to get out and go to some support groups. I’ve found new friends online — and, even though I might never meet them in “real life,” I do consider them friends. I can talk to them about things I can’t with my “real life” friends, because they just get it. I’ve even grown some sort of community of my own through my blog and Facebook page. Other parents ask me for advice! You might need to look for them, but they’re out there — your tribe.

9. She will always amaze me. I often find myself sitting and watching her, playing, singing, sleeping, and I wonder to myself how we created this amazing little being. Yes, her brain is wired a bit differently, but how cool is that? The world needs people who think differently, who are different. No matter what, she will always be amazing to me.

10. It’s what makes her, her. I get that some people wish there was a “cure” for autism. I get that life can be tough, and that as parents, we don’t want our children to experience difficulties. But, for me, to take away the autism would be to take away my child. For me, autism isn’t something she has, it’s something she is. It’s a part of her. She’s living in a world that isn’t geared towards her; it’s not her that’s wrong! If she was “cured” of her autism, she wouldn’t be her. I love her just as she is.

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10 Things I Wish I Knew Right After My Child's Autism Diagnosis


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The Challenges I Face With Sensory Issues as an Autistic Person

As an Autistic person, I can find it challenging to function in the world. I have sensory issues in all five senses, and noise is the most challenging for me to deal with. When I was younger, I would jump at loud sounds such as air brakes on buses, and I absolutely hated automatic hand dryers. My sensory issues have improved as I have grown older. I have learned to tolerate some sounds, but some sounds still bother me.

The wailing of a siren passing by the building I do an activity in can make me feel overloaded, so I cover my ears. I don’t like sirens at all; whether I’m in a car or in a building, I will hear the ambulance or firetruck coming and cover my ears in anticipation. I also really hate smoke alarms. I will not be the one waving a pillow back and forth under the smoke alarm because a piece of toast got burned in the toaster.

I am a selective eater. There are only certain foods (and certain brands of foods) I will eat. For instance, once a food brand was changed and I didn’t like it at first; I wanted the old brand back. Slowly, I adjusted to eating the new brand of food and I ended up liking it more than the old brand. I also am affected by the sense of smell. Mashed potatoes and oatmeal stinks to me. I do not like the smell of them. Sometimes I get overwhelmed by visual things. Bright lights bother me. Stage lights are nearly impossible to ignore, and camera flashes can cause me to go into sensory overload. Flashing lights also bother me, too.

To cope with my sensory issues, I have found that taking breaks and using earplugs and stim toys help me. I take multiple short breaks, which keeps me from getting overwhelmed by sound. I also use my earplugs, which reduce sound enough to where it does not bother me as much. The stim toys help me by providing a calming sensory input and helps with my fidgeting body.

Sensory issues are real, and I struggle with them, but I’m learning to accept my sensory issues as just a way of hearing, tasting, smelling and feeling the world differently.

Follow this journey on Ausomely Autistic.

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Talking to Family Friends About Our Son’s Autism Diagnosis

When my son Edward was first diagnosed as having Asperger’s syndrome, it didn’t come as a surprise to me. I had suspected he was on the spectrum on and off for quite a number of years. When we got home from the meeting with the psychologist, we contacted both sets of our parents and let them know. Then we had to work out who else to tell and in which order. Edward was 8 years old at the time, and it seemed only appropriate that seeing as he was old enough to understand, he should know about his diagnosis before anyone else. So we sat him down and told him.

His dad Nick and I both agreed that school staff needed to know. After that it became more tricky as we wanted to tell our friends but were aware that if we did so, some of them would inevitably mention it to their own children, and we wanted Edward to be settled with his diagnosis before he had other children asking him about it. Nick also needed a bit more time to get his head around it first. In the end, once we’d had a bit more time to digest the information as a family, we did start to tell our friends. One family must have talked about it in front of their own children, because one day, our daughter Leila came home from school reporting that one of our friend’s kids had asked, “Has Edward got autism?” We were just glad that we had sat our own kids down and explained autism to them first, because I wouldn’t have wanted any of my kids hearing about Edward’s autism as if it was something scary and frightening. Edward didn’t want his primary school class to be told about his diagnosis, although this was something offered to him by support staff.

Towards the end of primary school, Edward was open to letting family friends know about his diagnosis. We found a useful book for us called “Can I tell you about Asperger Syndrome?” by Jude Welton, a short read that can be read by children and time-pressed adults alike. Quite a few family friends read the book, and I think it gave them more understanding and patience towards Edward.

Once Edward reached high school, it seemed to me like a real shift had occurred in terms of how he viewed his autism diagnosis. He wrote this when he was 13 years old:

“I have a condition called Autism. It affects my behaviour, and makes me less social but more focused. Most people see autism as problem but I see it as a feature of personality. If there was a cure I would not take it…. because I would die and be replaced by another person inhabiting my body. It would not be me, but a less interesting version of me without my best and worst features.”

If you are telling people about your child’s autism, I think it is important to talk about their strengths as well as challenges. I recommend letting people know what things help them stay calm, what things they enjoy and what motivates them. Taking this approach can be a more positive way of explaining who your child is and what they might need.

I want Edward to know he has autism. I want other people to know and understand what this means, and I don’t want my son to feel like he has to hide. Our kids will become adults sooner than we can imagine, and a world where autism is less stigmatized will be a better place for them to flourish.

Edward wouldn’t be the interesting character we know and love if he wasn’t autistic. It seems to me like he has buckets more self-awareness, reflection and perseverance than I had at his age, and I believe the challenges he has faced might have helped with this. I hope this will stand him in good stead for the coming years.

Follow this journey on A Blog About Raising My Autistic Son.

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Learning to Recognize the Inner Anxiety of My Son on the Autism Spectrum

My son has anxiety. It is far more than just a bit of worry that can be soothed away with some reassuring words of encouragement. It plays a big part in his life, and it is important we take it seriously.

His worries seemed to grow as he was growing up. But at the time we didn’t realize all the different behaviors we saw were driven by his anxiety. And the more we tried to overcome it and force him into situations we thought he should be able to cope with, the worse we made it — because we didn’t take his anxiety seriously. We didn’t realize the effect his anxiety had on his emotions and behaviors.

So we bowed down to pressure. Pressure to make him conform to what was considered “normal.” Pressure from professionals who didn’t have the answers we were so desperately seeking. And pressure from ourselves to live up to the perfect family image everyone expected.

Pressure to fit our son into society’s neat little boxes.

But in fact, we quickly learned that the key to us being able to move forward as a family unit was far more about us learning to accept and embrace his differences as much as anything else. Learning to understand that his anxiety was a part of him. We had to learn how to unpick his behavior to see what was really going on underneath the surface.

Sometimes you can see the signs of his anxiety, even if you don’t know him inside and out like we do. It might be etched on his face, in his body language, in his movements. At times it seems to me like it completely takes over his body.

But his anxiety also has a side not everyone sees. This kind of anxiety disguises itself and takes many forms, and shows many faces.

We find ourselves putting labels on our children to give meaning to behaviors we may or may not understand, like “challenging behavior,” “disruptive,” avoidant.” But I fear that these labels might box our kids in, making us set rigid expectations for them in a world that should actually be far more flexible for children on the autism spectrum. I think what we should be doing is looking at how we, as the adults, respond to our children’s anxiety. How we reflect on our own practice, honestly, and without fear of criticism or failure. Believe me when I say that over the years I have made many mistakes. I have got things wrong, and spent many a sleepless night thinking how I could have handled things better. But when I think about it, those mistakes taught me so much.

We need to ask ourselves if we are flexible enough (because when fire meets fire, no one wins, I can tell you). We also need to be sharing good practices, sharing our successes and our failures. Working collaboratively with parents, and talking to colleagues openly. Bouncing ideas off each other in order to support our children effectively as a team.

We need to see beyond the labels.

Understanding that often their behavior might be telling us that something is wrong. And often if sensory issues can be ruled out, then a potential factor might be anxiety in disguise.

Anxiety can make kids isolate themselves and withdraw, often getting overlooked, confusing us to think that all is well, but their parents report seeing a different child at home. Anxiety can cause headaches or the feeling of being sick. Anxiety might affect a child’s ability to follow verbal instructions or pay attention in class.

I think we need to be open-minded and far more flexible. We need to see beyond the behavior and play detective.

We need to think outside of the box and make real accommodations in the classroom that are meaningful and not just ticking a box for a policy.

We should understand that one size doesn’t fit all, and every child is different. And see things from the child’s perspective and not just our own.

And hopefully, as a result, it will help ease the inner anxiety my son and kids who feel similarly might experience.

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The Stories I Weave Into the Birthday Cakes of My Son on the Autism Spectrum

I like to bake cakes for my son Vedant instead of buying them because it’s more personal. It took me a few years to get a grip on baking, decorating and understanding my son. But when I finally did, this became something I really look forward to. I get to share stories about his life through his birthday cakes.

For the first two years of his life, I was too enthusiastic to do everything over the top, so we’d order a huge cake for his birthday and throw a party, inviting a ton of guests. This was before his diagnosis.

Very close to his 3rd birthday, my mom passed away, so that year was a somber one.

It started with his 4th birthday. By this time, we knew he was on the autism spectrum. His diagnosis changed our perspective so much, and for the better. We were more in-tune with his likes and dislikes and respected them now more than ever. That year he was into trains. We had all kinds of trains in our house — Thomas trains, locomotives, battery-operated, pull-backs, plastic ones, die casts — you name it. We had train videos running in loop on our laptops, TVs and his tablet. The center of our living room had a train table instead of a coffee table, and we went to every single train display in town. His obsession with trains brought out so much in him. He could engage himself appropriately, play with a toy and sometimes have fun trying new things with his new hobby. He would talk to the train, saying “goodbye,” “come back,” “go home train” and more. So, that year was a no-brainer. His cake had to be a train.

Train cake that says happy bday Vedant

As he entered his fifth year and was ready for school, we were trying to teach him some basic academics. This was the year we began teaching him colors. There were color swatches all over our walls. His Hot Wheels cars came in all colors. Every morning we’d ask him to choose whether he wanted to wear his red, yellow or blue shirt. A walk down the parking lot ended up in a Q&A of car colors. It was about colors everywhere we went so it only made sense that his cake was all about colors, too.

Homemade cake with colorful candy and chocolate pieces

In May 2014, we got the annual pass for a theme park in our city. Vedant soon fell in love with that place. We have wonderful memories of our days at the park. He loved the thrill rides, going up and rushing down, spinning around in a carousel, or being dropped from a height. He enjoyed every bit of that place. I owe a lot to this park. It helped him on his road to getting independent.

Although we had the “special needs” pass for preferred boarding on rides, as much as we could, we stood in line and taught him to wait for his turn. He’d often get impatient, but eventually he learned to wait. This was wonderful because he could use this skill in many other places. As he got used to the routine of waiting in line and getting on the rides, we started letting him go on his own on rides where he was allowed to. In his excitement, he wouldn’t notice we were not next to him. As much as it made him independent, it gave us the confidence that it’s OK to let him be on his own. Given his love for this theme park, there was no way I could make anything else for his birthday. It was a difficult cake for someone like me with no background in cake-baking or decoration, but we got a smile on his face with it.

theme park cake with ferris wheel and roller coaster

Vedant has feeding issues. He still has a hard time chewing solids and tends to throw up easily. Consequently, food and Vedant don’t get along so well. For good or for bad, cookies, candies and pizzas have never been a motivator. This has been a challenge for us, and we worked on it. Then Vedant showed interest in ice cream. Several times during the day, he’d come to me and ask for ice cream. I decided to hand him a bowl and let him eat on his own. I’ve seen him evolve from a messy eater to someone who can clean up a bowl of ice cream within minutes. This love for ice cream has really improved his self-help skills when it comes to eating. He also discovered chocolates around this time, and very soon I was hearing more and more requests for chocolate. So, a chocolate- and ice-cream-themed cake it was.

ice-cream-themed cake that says happy bday

Vedant is primarily nonverbal and a lot of what he speaks can be hard to understand. For the past several years we’ve been trying different ways to teach him to communicate. We started with the traditional speech therapy, hoping he’d catch up with a little help. When we realized it was time to switch gears and try other things, we introduced the picture exchange communication system (PECS). Vendant did not seem to get it. By now, iPad apps for communication were getting popular, and at school, he was introduced to the TouchChat app. He is now using it more and more to communicate what he wants. Simultaneously, he got hooked on a few other apps on his iPad. The iPad symbolized a progress in his cognitive skills. He also had more control over his motor skills and an improving attention span. An iPad cake would be a befitting symbol of this progress.

cake with picture of iPad on top made with frosting

Sometimes the little things we do say so much about our lives. These are the stories I weave into the birthday cakes of my son on the autism spectrum.

Our son is the joy in our tears, the love in our worries, and the hope in our fears. He is what makes standing up and going forward every day possible. So as we navigate challenges, I don’t want to forget to celebrate the little victories, too. And what better way to celebrate than a piece of cake!

Follow this journey on Tulika’s blog.

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How Leah Remini Helped Me as an Autism Advocate

A few years after I was diagnosed as being on the autism spectrum, I decided to call up every online radio show about autism I could find. I wanted to thank the hosts for speaking about autism. But with one show in particular, after I called them, I ended up joining the team.

These people, who I looked up to, were part of an organization. I started to help out with that. Over time, however, things got strange. Everything was about their name, even though they would say it was for the autism community. I began to disagree with what they were asking of me.

After months of believing these people were my friends and cared about me, they turned their backs and spread false rumors. Although I was devastated, I was also really angry. I didn’t know how to trust people anymore, and I had a hard time continuing to help others because of that.

Fast-forward a few years later, and someone I know told me to watch a new show by actress Leah Remini. It was about an organization she had been a part of. She was saying how hard it was to trust people and how painful leaving the organization had been.

Finally, I felt like I wasn’t alone. Even though my experiences weren’t nearly as bad, I still felt like I could relate in some way. Somehow, it opened my eyes.

Now, I’m realizing it doesn’t matter what group I was a part of. It doesn’t matter how many friends I have. I can still make a difference. In fact, I can do it without being part of a group.

So thank you, Leah Remini. Thank you for being brave enough to share your experiences. You have shown me it’s OK to feel upset, but it’s important to stay true to myself.

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