What I Hear When People Ask, “Where Is He on the Spectrum?”

Let me start by saying that I am no expert on autism. I am just an individual who has more experience with this subject than your average individual.

Growing up with a sibling with autism, I’ve learned a lot. I know all the ins and outs, the rights and wrongs, the tips and tricks. I understand autism in ways that everyone else simply does not and that is the most frustrating part of it all. Few know what having autism even means. My goal is to eradicate all preconceived ideas and feelings about what people think autism is and/or looks like.

Autism, in its simplest terms, is a developmental disorder. It is characterized by difficulties in communication skills and social interactions. Autism is a spectrum disorder, meaning that the severity of these difficulties varies for any person who has it. The range seems endless.

When people find out that my brother has autism, the most common question I get asked is, “Where on the spectrum is he?” This is hands down one of my least favorite questions because, to be honest, I don’t really have an answer.

When I think of my brother, where he is on the spectrum isn’t exactly the first thing that comes to mind. To me, that question is the equivalent of asking someone, “What are your weaknesses?”

My brother, Nick, has a hard time with things involving communication and knowing how to react and respond in social situations. Does this matter to me? No, and nor do I think it should to anyone else. No one should be defined by what they struggle with. Just because someone has autism does not mean it makes it any less weird to ask this question.

But I get why people would ask. Most don’t know much about autism and this question is an attempt to gain more knowledge, which I can appreciate. However, asking about placement on the spectrum is like asking for a medical diagnosis, and any family member of someone with autism will tell you, that is not something they like to dwell on.

When people hear that someone has autism, they tend to think about it in a negative way. Not necessarily on purpose, but because people think of it as a disorder or disability. Scientifically, yes, I suppose that’s what autism is. However, this implies limitation, weakness, and inability to do what others can. I don’t like to view it like this. It is unfair to people with autism because it often overlooks their talents and strengths. That’s why I believe that autism is merely a minor setback.

My brother, Nick, may struggle with communication, but he is a phenomenal musician. He can play practically any song he has ever heard by ear. A trait I admire about Nick is that he doesn’t care what other people think, something I think a lot of people struggle with. He is fearless and there is not a challenge he won’t face and conquer. Having autism rarely holds him back and I find that truly amazing.

A misconception about my knowledge of autism is that I have all the answers. I am only going off of what I observe on a daily basis. No two kids with autism are alike. I don’t have an explanation for why any one person with autism does what they do. I don’t know why Nick freaks out when we play Christmas music on the radio but will play it to his hearts content on the piano. I couldn’t tell you why Nick is such a picky eater but will eat a whole package of bagels in one sitting. Why does Nick like to repeat lines he hears from his favorite movies all the time? Who knows?

I am just as clueless as anyone else as to why he does what he does. Is it because he has autism? It is possible that some aspects are, but we can’t forget that Nick has his own personality. It’s just the way he is. I refuse to believe that his autism defines him or anyone with it. Everyone probably does something out of the norm that others would question, so why should things people with autism do be any different?

Autism is not easily explained. It affects anyone who has it in drastically different ways that aren’t comparable to one another. A person who doesn’t live with or is not in regular contact with someone who has autism can’t begin to comprehend it on a personal level. It is very important to me that autism isn’t misinterpreted.

People with autism are human beings just like the rest of us and shouldn’t be viewed differently because of their minor setback.

This post originally appeared on Autism Empowerment.

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When Another Special Needs Parent Told Me It Doesn’t Get Easier…

I met a woman recently who has an older daughter with similar disabilities to my 6-year-old, Sully (both are cognitively challenged). I felt such a pull toward her, secretly harboring thoughts that she would pull me close, hug me and tell me it’s all going to be OK. That they grow up, they figure it out, and a happy ending exists. That’s not what she said.

When I finally had the chance to talk with her, the first thing that came out of her mouth was, “I wish I could tell you it gets easier. It doesn’t. It only gets harder. As they grow they become more and more different. They aren’t cute little kids anymore; they become teenagers and adults that just don’t fit in.”

CRUSHED. I was just crushed.

Where do I go from here? The last few weeks have been clouded with anger and sorrow. Then some rage mixed with tears and despair. There are days I’ve hardly been able to carry on a conversation. Thinking about what will come of the rest of his little life has consumed me.

This is where the choice comes in. When I was growing up and I would get in trouble for this or that, my dad would always give me a choice. Usually there was a clear option, but at least there was a choice right? Twenty five year later, I’m faced with the same decision. I can choose to continue to fill my days with anger and worry for his unknown future, or I can live believing he will thrive, filling my heart with hope and love, turning my compassion into action and my joy to motivation.

I guess if you quiet your mind and listen carefully to your heart, the decision is clear.

Choose hope, friends. Love without boundaries. Throw joy and compassion around recklessly. We all have our own truths; this is mine. And truth doesn’t mean you won’t have a bad day; truth is just deciding to kick your bad day’s ass.


This post originally appeared on PRIDE Coaching.

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To the Lady Who Told Me That My Daughter Is Beautiful

From the moment my daughter was born, she has been described as “dysmorphic” by medical professionals. I like to think of myself as an educated individual and I knew what it meant, but I still had to Google it… it’s what I do.

Dysmorphic: from the Greek origin meaning badness of form; abnormal.

Badness of form?! I heard this word over and over during her first 10 days of life spent in the cardiac ICU, from the geneticist, cardiologist, nurses, and so on. It’s a term I’ve come to despise. It took a toll on me. I went from seeing a perfect being to seeing this dysmorphic child they described.

Then, to see it in writing upon discharge was truly like rubbing salt in the wound. The list was endless… microcephaly, low set ears, small down-slanting eyes, wide nasal bridge, prominent epicanthal folds, small, slightly recessed chin. And that was just her face!

I began picking other people apart. It was my way of reassuring myself that no one is perfect. Aren’t we all just a little dysmorphic? I think it’s safe to say Jay Leno has a dysmorphic chin (sorry to single you out, Jay). However, his chin is PART of what makes Jay, well, Jay.

I built myself back up, only to have her ripped to shreds by a doctor at our children’s hospital. Unfortunately, bedside manner isn’t a requirement to be a neurosurgeon. He held her as if she were an alien, dangling her from her armpits and then he began to slowly pick her apart. We (I) left in tears and needless to say, we never went back. Once again I built myself back up; I did it for my daughter and my own mental well-being.

My skin has grown thicker and I know people will stare. Depending upon my mood, sometimes I angrily stare back; sometimes I smile as if to say, “It’s okay to ask questions”; sometimes (most times) I let it roll right off my shoulders.

special needs parenting the mighty

Just recently we attended an event celebrating a support group for families whose children have a chronic diagnosis/diagnoses. A wonderful photographer donated his time and expertise to this event. He had someone with him; I assumed it was his wife, but for all I know it was his sister. This lady gently made her way over to our table and said to me, “I cannot take my eyes off of her. I could watch her all night. She’s absolutely beautiful.”

I wanted to jump out of my seat, hug her and exclaim, “You see it, too?” Instead, I modestly said, “Thank you.” This is not to say no one has ever told me this before, but the sincerity of this stranger (who I will likely never see again) was almost unreal. It was the kind of sincerity that makes your eyes well up with tears.

As a parent of a special needs child, I know when someone is being genuine and I can sense when someone is just trying to be polite. So, to the lady who told me that my daughter is beautiful, thank you and I couldn’t agree more.

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To the Nurse Who Let Me Cry When I Needed It Most

I have been struggling with depression and bipolar disorder for most of my life. I have been hospitalized more times than I’d like to remember, and there is really only one hospital to which I would ever go.

The reason is because my favorite nurse works there and she always talks with me and treats me with respect. Her name is Martina and she has helped me through so much in the times that I’ve been to “her” hospital.

The first time I was hospitalized there in 2001, I just remember that it was one of the worst times in my life, and she just listened. She really heard what I was saying and didn’t give advice unless I wanted her advice.

I have since been to “her” hospital many times and usually she is my nurse. (I haven’t been hospitalized in almost five years.) I love to see her smile and I get happy when I know she is coming on shift and will be my nurse.

There was the time that I told her that I thought I was gay and was so scared about what she would say. She just said “Okay” like it was no big deal and told me that she would talk with one of the social workers (who was gay) and ask him about support groups and such. Next thing I knew, she came to me with lots of information and said that if I needed more, she would help me any way she could.

She told me that it was okay to be gay and that she really didn’t think that God had a problem with it (I was afraid that God wouldn’t love me anymore). She reassured me and said that she would be there if I needed anything.

Then there was the time in 2006 when I had tried to end my life and was living in a group home. I had been in the ICU and then was sent to the psych unit at her hospital. I was miserable, even though a very healing thing happened to me there. I was going to have a meeting with the director of my group home and I knew that they were going to tell me things I didn’t want to hear. I didn’t know exactly what they were going to say, but I talked with Martina about it. She told me to just sit there and listen and accept whatever they were telling me.

Then I went into the meeting and it was bad. They told me that I couldn’t have my car. I was going to be moved to a very restrictive house. Someone would be give me my medications. Basically, all my perceived freedoms were being taken away and I felt like I was being punished for attempting to end my life. (Although now I know that it was for my safety.)

After the meeting, I sat and ate my lunch and, through sobs of tears, talked with Martina about it. I’ll never forget this: she sat with me and let me cry, but she also was steadfast in her responses to my thinking that now my life was REALLY over. She said that it was okay to cry now, but that I needed to be strong and get through the next few months if I really wanted to get out of the group home. She told me to just do what I had to do (do whatever they said) and get things in order so I could leave the home for good.

She said that she believed in me and she knew that I would do it in a few months because it’s really what I wanted to do. She let me cry, but she also gave me the support and love that I so desperately needed at the time.

A few days later, I gave her a hug as I left the hospital and told her that I wouldn’t be back. The only time I ever went back was in 2010 for a brief “tune-up” and I haven’t been back since then.

She has always been there for me, though. She was the first person I called when my wife and I got engaged, and she was the most treasured guest at our wedding. These moments that she and I have shared have kept me on the straight and narrow for a long time and I’m so grateful for her support.

If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

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‘Real Housewives of New Jersey’ Mom Responds to Vile Comment About Autism

To the person who suggested people with autism are a waste:

When your appalling and uneducated comment appeared on the Facebook wall of the Autism Behavioral Services page, I couldn’t believe that a human being could have such a lack of compassion and empathy for others by having the audacity to say something so vile — and so publicly — about the life of another. I thought to myself, ”What a hateful, hurtful and ignorant thing to say!” For a moment, I found your comment extremely offensive, and I felt anger towards you.

For a moment, I allowed your words to upset me, but I quickly chose to take that power away from you. Instead, I began to feel sadness for you. I have no idea what challenges in life you’ve had to endure or what kind of mental programming you’ve grown up with for you to think the way you do. I don’t know what caused the anger and bitterness that compelled you to lash out to hurt others the way you did. I just know that hurt people… hurt people.

I began to think that maybe I could help you in some way. Maybe if I educated you, just a little, I could open your mind to a new way of thinking and possibly open your heart to allow in a little more compassion. I believe it’s worth an effort.

As a proud mother of a beautiful, intelligent, loving child with autism, I want to provide you with an answer to your seemingly seething question that you so boldly and publicly asked:

“Why do people give birth to autistic kids? Waste of societies resources.”

Well, let me educate you.

1. There’s no medical detection or prenatal test to predict that your child will be born with autism. Even if I had known of my son’s autism prior to his birth, I would have still chosen to give him Life.

2. Autism signs and symptoms are usually discovered within the first few years of life. (The life you believe should never exist.)

I’m a mother who waited six and a half years and went through five miscarriages to finally give birth to, who I consider, my miracle child. I couldn’t wait to hold him in my arms, look into his eyes and love him forever. The love for my child is immeasurable, and I will continue to love him unconditionally regardless of any challenges he may have. He’s a joy to our entire family and has taught us more in life than we ever imagined we would be teaching him. Thank God he exists. He’s worth every resource we can get that will help bring out the best individual he can be. He’s worth every skill we can teach him that may make his life a little easier in the future.

3. In case you’ve never done the research, autism is a bio-neurological developmental disability that affects the brain’s normal development of social and communication skills. People with autism can also exhibit some self-stimulatory and repetitive behaviors. These individuals process and handle information in their brain differently than other people — differently, not less than other people.

4. Autism is the fastest growing developmental disorder, affecting approximately 1 in 68 children in the U.S. It’s also underfunded. (So we need more of those limited resources you say are a waste.)

What makes you feel that you’re more entitled to life and the use of our society’s resources than someone with autism? (Different, not less!) What makes you feel superior? I’m curious… what useful and positive lessons do you feel you’re teaching the world from the resources you’ve already received?

5. Although there’s no known cure for autism, with the right early detection, intervention and treatment services, the challenges autism can present can be lessened.

I believe every life is worth fighting for and improving on… even yours.

6. Every child — with or without autism/some other challenge — matters. Every human being has something to contribute to this world if people would pay attention to the lessons to be learned from each individual.

7. Many well-known people who have been “suspected to have” or diagnosed on the autism spectrum have successfully contributed to this society. Imagine if none of them had been born.

I hope you take some time to understand how your insensitive words may have affected families, such as my own, who choose to see the beauty of children with autism. We love our kids unconditionally and endlessly. As parents, we will continue to fight hard to give our children whatever we can to give them the skills they need to help make their lives easier. We’re parents who will continue to believe that these bright souls not only have the power to continue to learn but also have plenty to teach the world. Raising a child on the autism spectrum is a joy and challenge every single day, and we appreciate any information, resources and support we can get from others. I hope in the future, you choose empathy over your lack of compassion.

Jacqueline Laurita


This letter was published with permission from The Real Mr. Housewife, where a longer version of it appeared exclusively, with an introduction from Editor Matt Richards.

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The Moment My ‘Limiting’ Wheelchair Became My Favorite Toy

When I was about 15 years old, I spent my days on YouTube watching videos of the professional skateboarder Ryan Sheckler and skateboarding tutorials. I knew my dream of becoming a skateboarder would never come true — I have cerebral palsy. I can barely walk on crutches, but I’d always wanted to skate. I dragged myself around every day with the help of my crutches or a walker. Then I closed my eyes and imagined my life without a disability and with a board under my feet.

When I was 15, I got my first wheelchair. I can’t walk for long distances, so before I got a wheelchair I was pushed around in a baby buggy whenever we had a long ways to walk. I didn’t like the fact that I couldn’t decide where I wanted to go, but walking was so exhausting that I really needed to sit down every once in a while. One day, my physical therapist asked me if I would like to get a wheelchair to replace the baby buggy, since I wasn’t a baby anymore. I agreed, so she told my family about it. It was not easy for them — they saw the wheelchair as something “very disabled” people use, and they didn’t see me that way. That is why I didn’t use the chair much in the first year. Walking, though tiring, was still less limiting.

Around the time I got my wheelchair, I was trying to learn German. One day, I was watching a German movie online and I noticed one of the main characters was in a wheelchair. I always read the names of the actors after watching a movie, and one name caught my eye: Aaron Fotheringham, wheelchair stuntman. I wondered what a wheelchair stuntman could do, so I Googled his name. The first results were YouTube videos, and the titles were things like “Wheelchair in a skateboard park.” Needless to say, I immediately pressed play.

That was the moment that changed the way I see my disability. I couldn’t take my eyes off this kid shredding the park on his chair with a motocross helmet on his head. At the end of the video, I was so happy I almost cried. It was possible; I could be a skater. Wheelchairs can be cool.

In that moment, I knew I needed to talk to that guy. I found a contact form on his website and sent him an email. I told him how his videos had opened the door to a whole new world for me, a world where dreams do come true. He replied the next day, and seeing his name in my inbox made me the happiest girl on the planet. There was someone telling me it was OK to have a disability. He was telling me there was nothing wrong with me and that the wheelchair was something to play with; it was not a bad thing. I found out he was not the only one hitting the skatepark on his chair. There was a whole team, a big family. I started dreaming about becoming a member of that family.

A few weeks later, Aaron told me he would be coming to Italy, where I live, for a TV show. They were filming in Rome, a six-hour drive from my town. Not close but not as far as his hometown — Las Vegas. I begged my parents to take me there. I knew I had to meet that kid. Eventually, they agreed to drive me to Rome.

When I met him, I was blown away by what he could do on his chair. Even my parents were impressed. We talked, played and had fun together. When I left Rome, I knew everything was going to be OK. My dreams could come true, and I could become the person I always wanted to be. That was only the beginning: I could also be independent and happy. My wheelchair became my favorite thing to play with. My disability was a blessing.

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 This post originally appeared on Ila’s Crazy Thoughts.

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