What the Diagnosis of My Son on the Autism Spectrum Means to Me

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There it was in black and white. It wasn’t a surprise — in fact, it was what I’d been suspecting for years. Still, on paper it looked so official, so permanent, so undeniable. Autism spectrum disorder, level one. Before the diagnostic label changed, this would have been called Asperger’s syndrome. The diagnosis specified an exclusion of verbal or cognitive delays. It’s all very clinical. Except it’s not. It’s my child.

He’s the same child he was before the diagnosis, but I’m not the same parent. We came to this diagnosis after a seven hour and two day psychological evaluation. I know some parents with children on the spectrum who can pinpoint an age where their child changed or regressed, a time when they began to notice something was a little different. I can pinpoint this time to when my child turned 3. I used to joke he bypassed the terrible 2s and became totally different at 3. Except it really wasn’t a joke. Of course, the question even science cannot yet answer is, what causes autism? Is it linked to the mysterious week long high fever my son contracted two weeks before his 3rd birthday? Is it genetic, biological, or both? Is there a causal relationship between autism and vaccines or diet? I can’t answer any of these questions, and if I have learned one thing through curve balls in life it’s to make peace with not knowing. It’s human to want answers. When we know why something happened, it is easier to wrap our heads around it. In reality, not everything has a discernible reason.

I will most likely never know the why of my son’s autism, but I know what to call the traits: the non-stop talk about obsessive interests, the difficulty reading social cues, the separation anxiety, the sensitivity to smells and noises, the rigidity and the overwhelm. More importantly, I also know my son, who can’t be summed up on paper. The boy who insisted on using his own money to buy his brother a birthday present. The boy who is incredibly smart, who can tell you all about garbage and recycling, and more recently, Kidz Bop and Taylor Swift. The boy who is fiercely loyal to his friends and does not hesitate to stand up for a classmate being picked on. The boy who asks if we can learn about undertows in school this week. The boy who has an impressive degree of self awareness.

Sometimes, when he is still awake two or three hours after being tucked in he will tell me, “Mom, sometimes my mind gets the best of me. It’s like a computer with pictures in it and the pictures keep coming up on the screen.” I am glad he can explain this. This is the same boy before the diagnosis.

So what does a “label” mean, exactly? The very use of labels is controversial. Despite efforts to raise awareness, there still exists a pervasive belief that autism is nothing but the latest fad label. Awareness of the spectrum is limited. Some people have an image of autism as a kid who can’t communicate at all. Some have an image of a “quirky” genius. Autism can be both of these things and neither of these things; the autism spectrum is everything in between. The saying goes, “If you’ve met one person with autism then you’ve met one person with autism.”

Why the label? The diagnosis is a tool. The diagnosis tells me not only the what but the where and the how. I know where to turn for support, resources, and the therapies that will help my child — and us as his parents — manage his struggles and build upon his strengths. I know how to understand his beautiful mind a little better and I know how to meet his needs. Not entirely, of course. Not perfectly. But better.

We have decided to continue homeschooling, gradually increasing the hours he spends at the school he attends for homeschooled children. The teacher and administrators have already been wonderfully accommodating, intervening promptly and effectively when he was having difficulties with a classmate, allowing him to choose not to participate in recess and allowing him to participate in the chapel with fewer children when the all-school chapel was too loud and overwhelming for him. The latter two accommodations were made without me asking. The small classroom of only nine kids and the small lunchroom allow him to be more comfortable, but still challenges him to function socially and within a group.

He is also in an environment where his individuality and needs are respected, which is the best way for him to learn. He will also begin participation in a social skills group and take classes at the local public school. His IQ tested in the 94th percentile, so we are hoping to get him in some advanced classes that meet his need to be challenged and his comfort level. Finally, we are working on visual schedules to help him with transitions. He does best when he knows what to expect and has some control over his environment.

When he is old enough to understand, we will tell him about his diagnosis because it is nothing to hide. We never want him to feel ashamed. It will be up to us to explain what it means.

He has difficulties that many people don’t experience, but he also has a unique way of seeing the world. He can understand things others cannot. He feels more deeply and thinks more intently, which means his lows may be lower but his highs will also be higher.

When he’s old enough, I plan to have him volunteer with me one Saturday a month when I work with kids on the spectrum. I believe that God calls us to use not only our gifts but also our struggles to help others. I want him to use his unique mind to understand and reach out to other kids who might be struggling, or might not seem to fit in.

As for me, I learned to always trust my parenting instincts. When my son started kindergarten at 5 I saw him sitting in the lunchroom with his hands tightly over his ears and tears rolling down his face while kids talked over and around him. I saw the teacher carry him into the classroom when he was upset. I listened when he begged me not to make him keep going to that school. I listened to my instinct and to my child, not to the “experts” who told me, “Oh, Mrs. Clark, kids do this. He’s fine. He’ll adjust. Maybe you just need to learn to let go?” Or maybe my child is on the spectrum and cannot handle a noisy lunchroom, or a crowded classroom or a long school day. I tried to tell myself it was just a phase, he was just young, things would work themselves out, but I didn’t believe it. As a parent, you know your child. If you know in your gut something is going on, don’t let the word “just” enter your vocabulary. You are the first expert and only advocate for your child. Trust yourself and trust your child.

If you are a fellow parent of a child on the autism spectrum, I can’t tell you why your child has autism, but I can tell you why your child has you: because you are the best for them. You are the perfect person to love them, struggle with them, fight for them, guide them, and sometimes just fumble through the dark with them.

If autism is not a part of your life, I simply ask you to understand there is no single picture of autism. The child in the grocery store who seems too old to be acting a certain way might be on the spectrum. So might the cashier. By the same token, a child on the spectrum may appear to be no different than any other child, but this doesn’t mean the diagnosis is any less legitimate. This same child may go home tonight and refuse to sleep until all of his money is counted and he had read no more or less than three chapters in his book. If you’ve met my son you’ve met an intelligent, empathic, loyal, intuitive boy who will talk your ear off about Taylor Swift and Kidz Bop. You’ve also met only one person with autism.

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My Journey to Receiving an Autism Diagnosis — and Why I’m Thankful for It

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Have you ever had a problem, or perhaps a question, that you really wanted answers and solutions to? Maybe the question was so mystifying and vague that you never thought an answer existed. Perhaps you figured, after years or even decades of searching, that the problem would always be present.

This is how I felt until about one month ago, when I received my autism diagnosis at age 21.

I’ve been doing a lot of thinking. An early diagnosis certainly would have helped me overall, especially through school. However, I still have plenty of time to adjust my daily life and thinking processes so I can improve the quality of my present.

I wasn’t surprised by my diagnosis. I had been considering the disorder as a possible reason for my struggles in life since I was 18, and a college counselor had suggested it as well. So, when I received my official diagnosis of autism spectrum disorder from a psychologist in mid-March, I just nodded and said something like, “Yeah. I kinda figured.”

Basic day-to-day living comes quite easily for me. But you see, all my life I have felt separated from the rest of the world. I have never been able to relate to the human population and humans as individuals. Since I started school, since the very first day, I realized I was far different from everyone else. I went through 13 years of education wondering why the noisy, bright, smelly classrooms and hallways made me upset and angry (sensory deficiency) and why socializing was near impossible.

I became an angry person. I was upset nearly all the time because I didn’t have my answer, my solution. I just wanted to know what was wrong with me. I attempted suicide twice and was in psychiatric hospitals at least five times. I was diagnosed with psychosis, depression, generalized anxiety disorder, obsessive-compulsive disorder, and other conditions that rolled through my life and were treated without success.

But I wasn’t experiencing psychosis. I see the world in a vastly different way than neurotypical people, and the only way I knew how to make friends in childhood and adolescence was through imaginary characters in my head. I don’t have OCD; I just like to organize junk, silverware, clutter and knick-knacks for no other reason than it’s satisfying. I bounce my legs, touch my ears and nose, and wring my hands because it’s comforting.

I do have unspecified anxiety disorder and unspecified depressive disorder, likely because of not being able to cope with aspects that can come with my autism — because I didn’t even know I was on the spectrum.

We as humans have learned a lot more about autism since I was born and while I grew up, and for that I am thankful, for otherwise I may have struggled a lot longer. By implementing a routine in my life and working with a counselor at the Department of Vocational Rehabilitation, I have already made leaps and bounds.

I’m still fully accepting my diagnosis, but for the most part, I have made peace with it. I finally have my answer.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Edaville Family Theme Park Offers Sensory-Friendly Weekend and Accommodations for Visitors

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As part of Autism Awareness Month, Edaville Family Theme Park in Carver, Massachusetts will host a sensory-friendly weekend for visitors on the autism spectrum.

The weekend’s festivities include educational and informational events as well as a “Touch a Truck” event featuring emergency vehicles. During the event, music will be turned down and the park’s trains will feature a softer blast. (Trains are required to sound their horns by law.)

Edaville, which features a railroad, has transformed one of the train cars into a quiet space for people on the autism spectrum. The car includes weighted blankets and fidget toys, which visitors can use while waiting in line. Edaville’s bathrooms are also designed to be sensory-friendly, eliminating noisy automatic toilets and hand dryers. These features are available year-round.

To make the park more accessible to those with sensory sensitivities, Cherie Daly, Edaville’s group sales director and special needs specialist, whose son is on the autism spectrum, spoke with educators, teachers, physical therapists and occupational therapists. Daly also hosted a discussion panel allowing families with autism to share ways the park could be adapted to suit the needs of individuals on the autism spectrum.

“Sensory Friendly Awareness Weekend, where everyone is welcome, is focused on inclusion, celebrating and having family fun,” Daly said. “We are very proud of the sensory friendly initiatives we put into place in 2016 that are available throughout the year. Our goal is to address the needs of all children, in the hope that all families will join us in creating lasting family memories.”

Edaville is not the only sensory-friendly theme park. Earlier this month, Legoland Florida announced a number of sensory-friendly initiative for visitors on the autism spectrum.

Edaville’s “Sensory Friendly Awareness Weekend” takes place from April 22 to April 23. Tickets are $27.00 and can be purchased online.

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My Autism Diagnosis at Age 21 Made Everything Come Together

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I was always told that honesty is important. So I was truthful, always. Well, apparently people don’t appreciate it when you’re honest. When you tell someone who’s being dishonest that they are, they might get angry. Especially teachers, or so I’ve learned. I would always get in trouble, but I never understood why. I was always polite as I’d learned and I was always honest as I’d learned. For a long time I just thought the problem was with me — I’m not likable, people just instantly hate me, I’m worthless. I struggled with these feelings from an early age. I changed schools, I got older, I tried new “tricks” to get in line. I did anything I could think of to please everybody. But people, both children and adults, seemed to take an instant disliking to me.

I didn’t understand other kids. I didn’t understand why they would be so loud or move so much. I hated games like “tag”; the touching made me feel uncomfortable. They’d say I was a sore loser but it wasn’t the being “tagged” that I disliked, it was the touch that came along with it. And I didn’t like the way everybody would move in an unpredictable way. I hated the shouting and the yelling that came along with it. In every way, other children were like aliens to me. I didn’t understand what they liked to talk about, how they liked to play, why they moved so much, the kind of toys they wanted for Christmas. Why they wouldn’t listen to their parents and our teachers. Because I always did what I was told, literally. Which in my experience got me in more trouble, with peers as well as adults. And that’s even more confusing.

I have autism spectrum disorder (ASD). After having quite a bumpy ride in my youth, I finally got the diagnosis that made everything come together at age 21. Now I’m 25 and it might sound weird to some, but I’m happy with my diagnosis. For such a long time there have been so many things that confused me or enraged me or made me feel uncomfortable in any other way. But I never understood those feelings, I couldn’t handle them, couldn’t channel them. So I got in trouble. I got in trouble a lot. That’s why, at an early age, I began struggling with the feeling that I didn’t want to live anymore. I told my mother for the first time when I was about 5, but when I saw her reaction, I decided not to mention it again. My parents are very important to me; for a very long time they have felt like the only true friends I had. I could say anything to them and they would understand. But she didn’t understand this, so I shut it away.

But it never left me. Even now I struggle with suicidal thoughts sometimes. I’ve had an eating disorder in my early 20s. I’ve struggled with anxiety attacks. There was a period that I’d self-harm as a way of coping, as a way of stimming. But with my diagnosis came understanding. Now I know who I am, why I do the things I do. And I have learned so much in these last couple of years. I always like to describe it as a “playbook” I have in my brain. I need this especially for social situations. “If A, then B. If not A, then C.” It may take me a while, but I’ll get you an appropriate response eventually. Most of the time. And when I don’t, I don’t. At least I won’t beat myself up over it.

It can be hard being an adult with ASD. People don’t believe me when I tell them. They think people with ASD are aggressive or anti-social. They think a lot. But they don’t think I could have it. That’s why I don’t like to tell people. Dealing with the comments of disbelief. I don’t want to have to validate my ASD. So I shut my mouth and deal with life the way I do. Even though I feel this might help keep the stigma, the misunderstanding, the disbelief in place. So yes, I’m sorry for not breaking through the ignorance. I’m sorry for not speaking up.

People will have to accept me the way I am, with or without knowing about my ASD.

If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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