9 Things I Wish I'd Known During Our Autism Diagnosis Process

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I remember back to the time that I first told my Hail’s pediatrician we would like to have our boy tested for autism. We’d noticed a lot of odd behavior — he would line everything up when he played, he had sensitivity issues and would gag on foods, would yank on his hair until he pulled it out, and he would bang his head on the wall when he was stressed out. He was delayed in milestones like walking, talking, crawling, and he preferred to play with garbage than all the toys we bought him. He would obsess over things for long periods of time. After a quick search online, the accumulation of things pointed to possibly autism or some other developmental delay. We were a bit freaked out but decided it was better to know and do something with it, read something, try a therapy — anything other than just guess and tell people that he was “just weird” or “we don’t know what’s wrong with him.” A diagnosis would help reassure us that we weren’t bad parents; there really was something wrong with our kid.

So, we asked for testing. While going through the process, we learned a lot of things we hadn’t previously been told. We found this quite daunting. Now that we’re “experienced” autism veteran parents (really there is no such thing as being experienced when it comes to autism) I feel that I need to share the knowledge I discovered when we were pursuing diagnosis to help make the process less scary for another new parent.

1. Autism is a spectrum disorder.

I know you’ve likely heard this several times, but if you’ve met one kid with autism, you’ve only met one kid with autism. Autism really is a spectrum disorder and can range from a huge spectrum of issues. Even within the same family, people can have different autism symptoms and still be on the spectrum. You’re firstborn could be completely nonverbal, have epilepsy and an IQ of 190. Your second child could just be a bit quirky, spin and flap when excited and not do social situations well. Or your child could be like Sheldon Cooper from “The Big Bang Theory” and be super nerdy and intelligent but have to have a bazillion rules in place to function.

2. Don’t let a doctor tell you your child doesn’t have autism without testing.

Many doctors feel that autism is over diagnosed. But since we simply know more about it than we ever did before, diagnosing it is easier. If you think back in your family, there’s likely one weird relative who was a bit eccentric and didn’t really relate well to the rest of the family. They might have had autism, but nobody knew what to call it then. Some doctors will even go as far as telling you that your child can’t possibly have autism because he looks you in the eyes when you speak or because they’re smart or can speak. Whatever the reason, these are still misconceptions, and your child could still have autism. It never hurts to have them tested if you suspect that they might be autistic or developmentally delayed. If your pediatrician won’t do testing, look into a developmental pediatrician or a psychiatrist who will.

3. There are different autism diagnoses — an educational autism diagnosis and a medical diagnosis. Pursue both.

You want to pursue both because they serve different purposes. If you have a medical diagnosis, it’s easier to pursue therapies such as applied behavioral analysis (ABA), occupational therapy and other types of medical help you may need through your insurance. Often times, comorbid diagnoses are present, such as sensory processing disorder or anxiety or even ADHD, and they are more easily treated if a doctor, therapist or psychiatrist knows your child also has autism.

4. Diagnosis can take a long time.

I say this because it really is true. Depending on your area, how many places are providing testing or availability of a doctor who can diagnose autism, a waiting list of a year or longer isn’t uncommon. In my area, with my insurance, it took us nearly nine months before we received a medical diagnosis and a year before we received an educational diagnosis. In my experience, when we pursued diagnoses — we did all kinds of other testing to ensure autism was the cause, and we weren’t looking at other developmental delays, auditory issues or other issues. The developmental pediatrician wouldn’t test for autism until everything else was ruled out.

Wait lists for services can be long; it’s better to focus on your child’s challenges and emphasize them than it is to sugarcoat them. If it’s diagnosis and treatment you want, the earlier you get treatment the better, but younger children can be hard to diagnose since the trajectory is so different for developing children.

5. You don’t have to try or stick with every treatment.

Treatment won’t harm a child who isn’t on the spectrum, but it could be important for someone who is. Trust your instincts on treatment and do your homework to make sure it feels right for you and your child because you know what’s best. Not everything you try will work. Not every treatment you try is going to be a good fit for your child or family. You don’t have to do them all.

6. You are your child’s only advocate.

Sometimes, you are your child’s only advocate. Nobody will fight for them like you will. Follow your instincts, and don’t give in to the experts who might not see what you see. You spend the most time with your child, while doctors and experts only see them for a few minutes in the office. A diagnosis doesn’t change who your child is or mean they won’t have a beautiful life and future. Find a wonderful group of supportive people in the trenches, even before you have a diagnosis, because they are the best resources you will ever have in navigating this territory.

7. It’s OK to be angry.

In the beginning, I was angry at the disability, the label, the diagnosis. Now, I look to how I can improve access to acceptance, therapy choices by way of improving insurance, respite, education and transitioning into adulthood challenges. Disability happens, but how we treat that person as a society defines us, not people with disabilities.

8. Don’t be afraid of a diagnosis.

You’re not labeling your child with a problem. You’re identifying tools to help them. And the diagnosis doesn’t change who they are. Everything amazing about them is still amazing. A diagnosis doesn’t change who your child is. It does not change your path as a parent or as a family. Your child is who they are, diagnosed or not. It gives you answers and ideas, diagnosis does not make your child any different than the day before diagnosis. If anything, a diagnosis will help you help your child better.

9. Don’t compare your child to other children.

 Yes, that is ridiculously difficult to do as you see other kids doing things your child can’t or isn’t yet able to do.  Compare him to his past self — three, six, 12 months ago. That’s when you see how much he’s progressed. Celebrate everything. Whether it’s your child’s first swear word or having an argument with you that makes logical sense, to eating a new food. All milestones are important and specific and unique to your child. Celebrate them all.

Navigating a diagnosis can be difficult and cause a lot of hard feelings between family members, friends and even parents of the child. There are some who are still going to just assume you’re the cause of your child’s behavior. Some will say they don’t believe in autism. There are also those who won’t agree with your child’s diagnosis and will go out of their way to disagree with you and do whatever they can to tell you how incorrect or wrong you are. You may lose friends and family members over pursuing a diagnosis and treatment.

Do what you feel is best for your child.

A version of this post appeared on Need More Crayons.

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What We Really Mean When We Say 'I'm Fine'

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“I’m fine.”

These words are spoken by most parents of children with special needs.

What we really mean is we are tired. And sometimes broken, sometimes sad, sometimes hurt, aching or numb. Or we might be excited, shocked, cautiously optimistic. But we say fine because so much of the time it’s the safest thing to say.

Some days with Kreed are amazing and wonderful and hearing his voice is the greatest joy of our life. Other days my muscles ache from his rages and I’m numb to my feelings. But deep down inside I’m so incredibly sad for any pain he feels.

Like I said — I’m fine.

Some days I wish someone would finally look at me and say, “You are most definitely not fine.” But then I know I will still lie through my teeth. Sometimes I ask myself, “Why? Why do we say we’re fine?” I think it’s because the alternative is too great, the emotions are too raw and powerful, and we feel as if we would drown in those emotions if we actually felt them.

Not everyone talks about this side. When you’ve spent nights and days awake for weeks or months on end and can no longer even tell the difference between day and night or even if it’s a week day or a weekend. When you lie next to your child at night listening to them breathe and are thankful for each breath they take because you fear when you hear them struggling for breath. Or when you watch your child pound their head into the ground because it hurts so bad, and somehow in their body, hurting their head makes it better. Or when you’re holding your son and the tears roll down his face into your hand while you’re keeping him safe. You would do anything in the world to alleviate their suffering.

But I’m fine.

I have to be fine. When people ask me how do you do it, the answer is simple. Because I do. Because what other choice do I have? He’s my son. He is my heart. He is my soul. When your soul is hurting, you would do anything to make it better. So I search for answers, I research, I connect with doctors and I never stop until I know he feels better.

Because he’s not fine. He is in pain, and he is telling me. His emotions are raw, his feelings are more real than I’ve ever seen and his voice rings true — he can’t say he’s fine when he’s not. I have to be there for him. I have to help him. I have to be fine for him. If I break down, it means nothing will be solved for him. I can’t do that to him.

So I’m fine.

We do what we can, when we can, for ourselves. Five minutes here. Five minutes there. Or on calm nights we get snuggly and catch up on our DVR. We rejoice in those quiet moments and save up our strength for the storms we know will come.

The thing about the storms though — they come, they rage, they blow us around and knock us against walls and then the calm comes. We can breathe. We take time. We heal. We love. We strengthen ourselves for the next storm.

Not everyone’s experience is like ours, but I can tell you without a doubt, every special needs parent you meet has weathered storms you’ll never know about, and lived to tell you another day they are fine.

Behind every “fine” is a story, a past, a strong heart and soul who has seen more and experienced more than most people will ever realize.

Because we are fine.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

A version of this post originally appeared on Kreed’s World

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Autism, Thank You for Giving Me Space to Parent Differently

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Dear Autism,

I wanted to take a minute to say thank you. Thank you for giving me permission to parent my kids differently than “they” all think we parents “should” do things.

Thank you for allowing me to search for opportunities to take classes on being a better parent. It’s not often you get to go to school to be a mom, but because of you, I get to take classes on a lot of different subjects. I think it’s made me a better parent, wife and person. As a bonus, most of these courses are covered by the government here in Ontario.

Thank you most for showing me pure happiness. One of the best things about autism is that it is honest and true. I get to see, feel and enjoy total bliss. It’s wonderful and contagious.

Thank you for opening my heart and allowing me to ask for help. I’ve met so many wonderful people along this journey. I feel blessed and thankful 80 percent of the time, which is a real gift.

Thank you, Autism. I never knew I wanted to meet you, but I’m a better person for having done so.

Love,

Blythe

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'Weird Al' Yankovic and Children With Autism Put On a Joyful Performance

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“Weird Al” Yankovic, a singer-songwriter known for his parodies of popular songs, shared the stage with Jodi DiPiazza, a 13-year-old musician with autism, on Sunday night for a heartwarming duet of Yankovic’s song “Yoda,” Time reported. At the end of the song, the Actionplay chorus, also comprised of singers with autism, joined in.

The performance was a part of Comedy Central’s benefit night for autism called “Night of Too Many Stars,” which since 2006 has raised more than 18 million dollars for autism research, as well as programs and services, according to Comedy Central’s website.

The last time Comedy Central hosted the event, in 2012, DiPiazza brought down the house when she performed the song “Firework” with Katy Perry.

Check out DiPiazza’s most recent performance in the video below: 

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When a Stranger's Facebook Message Changed My Life

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Finding support through this autism journey has not been easy. Most people are ignorant of autism, and I believe it’s one of the most misunderstood disabilities. People are not sure if they should say, “I’m sorry,” or if they should say, “Oh, my best friend’s child had something similar, and he/she is perfectly normal today.”

I’m beginning to get to a place where words like this cause me to cringe a little less. After all, unless you’re walking in our shoes and facing this challenge yourself, you truly do not know.

My husband and I don’t have a lot of support. Our own parents help in every way possible, but they’re going through health issues and caring for their own elderly parents. Friends have come and gone, as happens throughout life. Years ago, when we lost our daughter to a congenital heart defect (CHD), we had tons of support.

I’ve pondered this over the last few months, and I think I know the reason. First of all, we’re much older now, and most of our friends are just living life. I’ve noticed people get more busy with each passing day. No one has time to do much of anything other than go through the motions of life. I understand, trust me.

Although my path is far different than the paths of others, I know what it means to be overwhelmed with work, kids and just life. Don’t get me wrong, I think there are tons of people who perhaps could help and just don’t know how. I get it. The same applied years ago with our daughter. We knew no one could care for her the way we could.

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Unless you live with autism, day in and day out, you will not know. Even some of our closest friends think life is pretty easy for us and fail to see that we keep things easy for Drake. Yes, he’s an easy-going, sweet little guy, but we have worked so hard and sheltered him to help him feel secure.

I believe this has helped foster a wonderful little personality. But we can’t just pack up our clothes, hire a babysitter and go off on a weekend getaway. People aren’t willing to give up part of their busy lives to learn how to live our life. I don’t blame them. No one has time to do that.

It’s hard enough to live my own life, much less learn how to walk in another set of shoes.

But then there are complete strangers who just take it upon themselves to help. I’m in awe of these people. I want to be these people. I believe strangers show up because God told them to.

A few weeks ago a women’s Christian conference, sponsored by a local church, came to our area. This conference has happened for a few years in our small town, and I’ve always heard wonderful things. A month or so before the big day, a few people suggested I attend.

One of the speakers was a comedian named Kelly Ingram. Kelly has a son with autism and chooses to laugh at the life God gave her. She is quite an inspiration. People who suggested I attend wanted me to hear her speak. I was grateful people were thinking of me, and I had no doubt the conference would be amazing, but I was reserved to attend. Drake has therapy every single day of the week. The weekend is the only time we can just chill and not have the demands of life weigh on us.

I didn’t feel particularly motivated to attend and no one was pushing the issue. Until Laura*.

A few days before the conference I received a Facebook message from a stranger named Laura. I’ve edited some of the text to shorten the conversation and changed the stranger’s name for her privacy”

I read your blog, and I really would like for you to meet one of the speakers, Kelly Ingram, at the WOW conference. Her son is autistic, and she is an amazing Christian woman. May I bring you a ticket and you can come and go as your schedule permits? My daughter attends CCMS [This is the school where I teach]. Your blog really touched me.

I had to Facebook-stalk sweet Laura. I looked through a few of her pictures and recognized her daughter. I’ve never taught her child, but I did recognize her. I was intrigued. Why would this woman do this? I think this was the first time I realized people actually get our situation, even if I don’t think they notice.

People are reading what I write. Laura helped me to see people care and some will go to great lengths to let you know they understand your journey. This stranger stepped off the highway of life and walked down this bumpy, rocky, uncertain path with me for just a moment.

It meant everything to me.

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I met sweet Laura in person and wasn’t able to put into words what I was feeling during our brief encounter. I hope my words here will show her I believe God used her in an amazing way.

The conference was wonderful and everything I needed it to be on many levels. This stranger didn’t just utter words of encouragement, but she put her thoughts and feelings into action. Laura put her life aside for just a moment to touch my life. I believe she listened when God told her to reach out. Thank you for showing me incredible love, Laura.

May we all be a Laura.

A version of this post originally appeared on Walking With Drake.

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When a Mom Noticed How My Grandson Was Being Treated at a Birthday Party

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My grandson is on the autism spectrum.

He has challenges, but we are trying — he is trying — to find our way through.

He couldn’t stand the sound of water running and a toilet flushing since birth. He couldn’t stand the sound of a vacuum, hair dryer, any fans or too many voices. He couldn’t stand on the grass without freezing or enjoy the feeling of sand on his feet or hands, but we had to try to help him.

He had been using his “heavenphones” (headphones) at home when we vacuumed, ran a bath, flushed the toilet, etc. So, I got permission to have him bring them to school. It was awesome.

He could could interact with the other kids, he could listen to the teacher and this, with his breathing exercises (three deep breaths in though the mouth and out through the nose), appeared to make a huge difference. Wearing his “heavenphones” was entirely up to him. He would take them off and put them on as he felt he needed them. Keep in mind at this point he was barely 4 years old.

We noticed he still had the hardest time just after snack. He is allergic to peanuts and had “safety snacks” at school. If the snack had any chance of having peanuts, he would eat the snack from home instead. I had noticed at home he had trouble after having sugar. All kids get a little amped, right? So, we decided to drastically reduce the amount of sugar in his diet. It was like night and day. His teacher had mentioned her son had trouble with red dyes, so we took those out as well and he did great! So, from that time on, he brought his snacks to school.

But it made him “different.” I have many pictures of him at preschool where everyone else had juice boxes, cookies or cake and he had Goldfish and water. No one invited the kid who couldn’t eat cake to a their birthday party.

Between his second year of preschool and Kindergarten, he was invited to a birthday party for a little boy whose mom was a teacher at the school and knew him. It was at this party that something happened that blew us away.

My daughter had contacted the mom of the little boy and accepted the invitation. She told her she would send him with bottled water and sugar-free cookies so he would share in the snack time, and she brought enough for him to share. At this point, he was only wearing his “heavenphones” for maybe 25 percent of his time in school and many days, he didn’t wear them at all.

The party was at a place called “My Gym.” My daughter brought the snacks and his “heavenphones” with them, and off he went to play. About 10 minutes later, he came and got his “heavenphones” and a drink of water and returned to playing. My daughter could see she was getting some looks from the other parents. There had been soda provided for the kids but he was drinking water. And wearing headphones.

He played for about another 15 minutes, came back and got another drink of water and took off his “heavenphones.” It was at this point one of the moms decided to confront my daughter.

It started with one mom and turned into a group discussion. My daughter explained he had problems with noises and wasn’t able to “deal” with sugar. She explained that he disliked the feeling of being out of control and the way sugar affected him. He, at 4 years old, would ask you when you gave him something how many grams of sugar it contained. He had decided that 3 grams was his limit. He decided, not us.

It was decided by the “mom mob” that my daughter was being mean by not allowing him to share in the birthday cake, candy and pop. It was decided that she was making him odd, making him stand out, embarrassing him. They decided that she should let him eat sugar on special occasions such as this.

When it was time for cake and presents, the birthday boy’s mom skipped the cake for him, and he had his water and cookies. He even shared with the other kids. One of the “mom mob” walked over and gave him a can of pop. Before my daughter could say a word, my grandson gave it back to her and said, “No thank you.”

She tried to give it to him again and again, but he refused. As everyone was leaving the party, gift bags were given out at the door. One of the moms gave him the gift bag and he looked inside and gave it back to her. He told her, “No thank you, that is too much sugar for me,” and proceeded to leave.

The mom stood in the door and insisted he take it. My daughter was about to come unglued when he quietly took the bag, handed it to her and said “Here mommy, you know what to do with this.” And they left.

The mother of the birthday boy was totally unaware of all of this, but, another mom, who also knew my grandson, was aware. Several months later, he was invited to that little boy’s birthday party, where water was supplied for him, the gift bags had no candy and the cake was sent home in dixie cups. She told my daughter she was sorry she hadn’t supported her at the previous birthday party, but my daughter and grandson had both done such a good job, she had just let it go. She knew he would be invited to her son’s birthday and it wouldn’t be repeated. None of the children whose parents had been rude to them were invited.

My grandson is in kindergarten now. He is 6 years old. I found his “heavenphones” the other day under a bunch of toys. He doesn’t use them anymore. He loves the feeling of fans on his face, he rolls in the grass. He loves the beach and digging in the sand. He still does his breathing, and his kindergarten teacher has a “secret signal” to remind him when he needs to. We, and it is a group effort, have goals we are working on.

He brings home a colored slip of paper with a bear or bunny that says, “Great Day Today!” and we hang it on the wall for everyone to see. I love to see his face when he gets off the bus and knows he has one to hang. If he doesn’t, we discuss why it happened and what he can do to have a better day tomorrow.

Boy holding "Great job today!" sign in a classroom

He still doesn’t eat much sugar but he now accepts the cupcake or cookie and brings it home to split with his little sister (half the sugar, Nana!). If he starts to feel edgy or jittery, he goes and gets some string cheese or something with protein to counteract it.

He may always have challenges, but that’s not the end of the world.

He is a wonderful, energetic, beautiful little boy who has found Legos. He can sit for hours and create new things. He can follow step by step to make things that are thousands of pieces. He reads and does math on a second grade level and frankly, there is nothing wrong with him. He is my grandson, and I wouldn’t want him to be anyone else. He just came home from school and guess what? Yup, he got a purple bunny today!

Nice job.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

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