To Robert De Niro, From Someone on the Autism Spectrum

639
639
1

Dear Robert De Niro,

As someone on the autism spectrum myself, I want to thank you. In fact, my appreciation has nothing to do with the film.

I was not diagnosed until I was about 15 years old (I’m 26 years old now). Those first 15 years were a long battle full of misunderstandings and meltdowns. It seemed like everything I did was wrong, and I didn’t know why. When I finally received the diagnosis, people began to understand me more. And although I still have many challenging moments, things have become easier over time.

I cannot understand what it is like to have a child on the spectrum because I do not have a child on the spectrum. Nor can I speak for anyone else other than myself. However, I can say that I wish I had received my diagnosis sooner. I wish people had known. I feel it would have reduced the amount of stress and anxiety I had from the lack of understanding.

Since I was diagnosed, I have become a major advocate. I try to spread awareness as much as I can. I try to focus on the things I’m capable of and spread hope. There are still times when it’s difficult and I get frustrated and just want to say “I can’t do that.” But we all have these bad days – some more than others.

In the end, I just want people to know. I want them not to be mad at me when I need to take a break after only a few hours of work. I want them to realize I’m not overreacting to the firetruck going by, but that the siren really hurts my ears. I’d like them to give me a moment to process what they’ve said in a conversation so I don’t misinterpret it. In the end, I really just want people to be more autism aware.

This is why I want to thank you for being a voice in the autism community. Thank you for spreading awareness, simply by stating that you know someone on the spectrum. Thank you for helping everyone to become more aware.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

639
639
1

RELATED VIDEOS

JOIN THE CONVERSATION

Robert De Niro Removes Anti-Vaccine Documentary From the Tribeca Film Festival

971
971
8

Robert De Niro made headlines earlier this week when it was announced that anti-vaccine documentary “Vaxxed: From Cover-Up to Catastrophe,” was slated for an April 24 showing at the Tribeca Film Festival. After generating a great deal of criticism, it was announced on Saturday that the documentary was removed from the festival lineup.

De Niro, who co-founded the festival in 2002, released the following statement about the decision:

My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for. The Festival doesn’t seek to avoid or shy away from controversy. However, we have concerns with certain things in this film that we feel prevent us from presenting it in the Festival program. We have decided to remove it from our schedule.”

A day earlier, he’d responded to criticism over the documentary’s inclusion in the festival, saying:

In the 15 years since the Tribeca Film Festival was founded, I have never asked for a film to be screened or gotten involved in the programming. However, this is very personal to me and my family and I want there to be a discussion, which is why we will be screening ‘Vaxxed.’ I am not personally endorsing the film, nor am I anti-vaccination; I am only providing the opportunity for a conversation around the issue.”

“Vaxxed” is directed by Andrew Wakefield, the former doctor behind a 1998 study published in the medical journal the Lancet that claimed to find links between autism and the MMR vaccine (measles, mumps and rubella). The study was retracted by the Lancet in 2010. Wakefield lost his medical license the same year.

Lead photo source: Thinkstock Images

971
971
8
JOIN THE CONVERSATION

When Advocating Becomes Bullying in the Autism Community

194
194
3

As someone on the autism spectrum, I definitely consider myself to be a major self-advocate. I truly love sharing my experiences. My hope is that others can take what I’ve been through and apply it in a way that may help someone else on the spectrum.

Sometimes it can be difficult to be an advocate. I need to remember that I’m not the only one with an opinion. I need to remember to be respectful, even if I disagree. But I’ve been seeing another issue lately. That issue is when I see others — both on and off the spectrum — attacking each other and complaining about the things they don’t like. I don’t just mean disagreeing. What I’m seeing is almost bullying.

As World Autism Awareness Day draws near, I have seen multiple strong-worded posts about how people who aren’t on the spectrum should and shouldn’t act. And they were posted in a support group for people who aren’t on the spectrum. I saw other posts bashing people simply for trying to show support to an organization of their choice.

I see a lot of people complain about the way others spread awareness (and I will be the first to admit that I’ve been guilty of this at times, too!). But I think there comes a point where the autism community needs to stop criticizing the way others advocate, and start to just ignore those actions if they really dislike them that much. Instead, just advocate the way you would like to. Stop telling others what not to like, and spread the love of what you would like to see instead.

Let’s be happy for others, instead of taking positive stories and turning them into something to be unhappy about. Advocating shouldn’t be about tearing down the people who you disagree with. It should be about supporting others who you appreciate and lifting them up.

I’m going to try to remember to do this more often. It’s tough at times, but I am tired of the hate. There’s a fine line between taking a stand and being negative or even downright rude or mean.

April is Autism Awareness Month. Let’s remember to be kind to one another when we spread autism awareness, acceptance and understanding.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

194
194
3
JOIN THE CONVERSATION

When You Ask a Child on the Autism Spectrum to Stop What He or She Is Doing

4k
4k
3

I like to try to explain things by using bodily functions as examples. Because often with people on the spectrum, some of the things we do seem less important to others. But for us, it’s a need, not a want.

Imagine you really had to go to the bathroom, and you finally get to go, but then someone makes you stop and go with them to the grocery store instead. Or go eat lunch. Or say it’s time to do dishes.

That would seem like a form of punishment or torture, right? Not only would it make you upset, but it would make you feel incredibly uncomfortable. The whole time you’re supposed to be doing this other activity, and all you’re going to think about in the back of your mind is going back to the bathroom and finishing your business. You might even plead with the person who made you stop!

“Please!? I’m almost done. Just a few more minutes. I’ll be quick. I’ll come right back and go with you…”

Now imagine a little kid, one who hasn’t had as much practice with social cues or “appropriateness,” or who needs a little more help in areas you might do quite well in (after all, adults have had more practice). Imagine that he’s watching cartoons (or playing with Legos, or whatever), and you need to leave to run an errand or it’s time for dinner, etc.

You tell him it’s time to go. To stop what he’s doing and come with you. To some on the spectrum, that can be a really hard thing to do. Their brains and their bodies might be telling them it’s not time yet. They’re in the middle of something. They can’t leave yet, they’re not finished.

So you get a little more stern: “I said let’s go!”

It registers that they’re going to have to leave before they’re finished. So they get angry or upset or start crying. Maybe they plead with you: “Please! Just a little bit longer! It’s not over yet! I’m not done!”

To you, this may seem like defiance (and hey, I don’t know your kid — maybe it is), but more than likely it’s because they didn’t have enough time to prepare for what was going to happen. They didn’t have time to finish what they started.

Which is why transitions are a big thing within the autism community — transition songs, transition actions or “warnings.” I know some people who use timers, and some who sing the clean-up song while they’re cleaning, then they’re able to use it as a warning. They can start singing it in the background while they’re playing to let them know what’s to come. 

It’s also one of the reasons routine can be such a big deal. With routine, they know what’s coming. They know they have enough time to finish their show, because every time it ends, that’s when we do whatever comes next.

So, the point I’m trying to make with this is — remember to try to be patient.

Nine times out of 10, they’re probably not trying to give you a hard time. They’re the ones having a hard time and communicating and expressing that stress or frustration in the only way they know how.

Instead of getting upset, try to find ways to help them through it.

At bedtime, we do the exact same thing every night. We never leave the house after that bedtime routine should be started. We never stay out longer than we should. Company isn’t allowed over when we start that routine (unless I know it’s not going to affect them specifically). Because their calm, happiness and understanding is important to me. And I don’t want to cause more stress and strain on them or me. Sure, it means we might not get to do some fun things, but until they understand better and can cope better, this is what we’ll do.

I suggest really paying attention. Are there situations that could be helped by making sure your kids (or grandkids or students) understand what’s coming next and better preparing them for it? So their heads and bodies aren’t shouting, “What are you doing? We’re not done! Don’t leave!”

Maybe wait until the credits are rolling to leave, or ask to help them finish their Lego masterpiece so they’ll come do the dishes.

Each kid is unique and may need something completely different than the next in order to succeed in life. And that’s totally OK. We just need to figure out what it is so we can help.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

4k
4k
3
TOPICS
JOIN THE CONVERSATION

What We Need From the Grandparents of Our Son With Autism

2k
2k
9

So you realize he’s “different,” and everything we’ve been telling you is, in fact, true. Instantly, all the plans and dreams you had for him changed. You may not have said that out loud, but we can tell by your absence. Don’t worry, we understand.

It might not be OK for you right now or may be even ever OK with you. Trust me, we know how you feel. It took us awhile to accept that he may stand out in the world. All the dreams we had for him suddenly seemed clouded after we received his diagnosis. It also took us awhile to realize he’s still the same lovable kid we met the day he was born. Nothing, not even an autism diagnosis, can change that.

Candace Arce's son
Candace’s son.

There are days when we can’t even think straight. We have all these thoughts going through our minds at once causing us to be confused, frustrated and emotional at times. As I type, tears fill my eyes. Why? I’m not even sure why, even the trivial seems insurmountable at times.

Every day we push on even when we think we can’t. We make ourselves get up, tell each other to take one step at a time and it’ll be OK. People say that you have to take care of yourself before you can take care of others, but what they forget to mention is how you’re supposed to do that. How do you do that when your son needs you and you are his main advocate? After juggling work, therapies, family time and anything else he needs, there’s often no time in the day left for “me time,” let alone “us time.”

Before the sun even comes up, we’re up and starting our day. Our day doesn’t end until he closes his eyes for the night, and this is just his first attempt at sleep. He’ll be up in a couple of hours, and we’ll try and put him back to sleep. He’ll wake up two or three times a night. If he doesn’t sleep, we don’t sleep.

He also has food issues because he has sensory processing disorder in addition to autism. It can be challenging for him to socialize with other kids and he has sensory overload if we are in a public place for too long. He’s nonverbal right now and gets frustrated because it’s hard for him to tell us what he wants or needs. When we hear other kids his age talking and calling out to their mother or father, we feel a lump in our throats. What we wouldn’t give to just hear his voice. We hold back our tears and remind each other how far he has come since his diagnosis and we hold onto that like gold.

Why am I sharing this with you? I’m sharing this with you because we need you. We may not ask or express our need for you, but when you are there, it makes a difference. We need your understanding, your presence and willingness to listen without judgment.

This may be a lot to ask from you, and you may not know how to do this for us, but we’re asking for you to try. We also didn’t know where to start when we jumped on this amazingly complicated journey, but we jumped in because we didn’t want him to be on it alone. We would and will do anything for him because we are his parents. I’m sure you know how that feels, right?

I guarantee you if you jump on this journey with us, you’ll explore a world that you could have never imagined. He has taught us so much already at his young age. His smile and laugh can light up a room. He’s funny and smart and marches to the beat of his own drum, and that’s OK because he allows us to watch with amazement and cheer him on.

Sure, there are bad days, but the bad days are overshadowed by the good days. So I don’t think he would mind if you joined in on this journey with us. What do you say? Ready for an adventure?

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

2k
2k
9
TOPICS
JOIN THE CONVERSATION

Inside the Mind of a Mom at Her 75th IEP Meeting

1
1
0

It was not my first IEP meeting. Hardly. My 75th team meeting to be exact. With three boys on the autism spectrum, I am a professional IEP parent. We joke that I should have my own coffee mug at the table. I could have wallpapered my home by now with the stacks of required paperwork handed out by law at every assemblage.

I’ve been through three diagnosis moments with my sons. A couple of years ago I made the choice to pull one of my boys from the mainstream classroom into a sub-separate autism program. I’ve sat through meetings based entirely upon the bullying my child has been the victim of.

This meeting was for my oldest son who had just started high school. He had wanted to try to take an elective and go without the extra academic help he had needed for so long. He ached to be a “typical” kid in high school who got to enjoy the extras. My children have had to miss out on these extras for so much of their childhood. While other children are enjoying their extracurricular activities or time with friends, my boys so often spend their time at doctor appointments, therapy or receiving extra help.

He just wanted to take a fun elective. Video production. We agreed to let him give it a shot. In the weeks that had turned from summer to fall, it had become his favorite class. He lit up talking about the projects they were working on and the new kids he had met.

But then there was the flip side. The school had asked me to come in because he was struggling in his other classes. The alternative to his elective was a class called academic support. The class where you receive help in succeeding in all your other classes. The class where you do additional work while your fellow students are in their elective or joking around and socializing in study hall.

I knew what they were going to say. I knew the decision I was going to have to make. He needed the academic support. He is a brilliant boy with intelligence that blows his peers out of the water. He has a MENSA IQ. He takes endless pride in it. But unfortunately, his executive functioning challenges often get in the way of his intelligence, being reflected in his work or on his report card.

I sat in that meeting and tried painfully to hold back the tears. My voice was on the edge. My throat ached. I paused between sentences in hopes that the emotion would leave me. A hundred times in these years of parenting I have been on that precipice. The wave of emotional pain rising in my chest. The sadness enveloping me. And almost always, I am able to push the tears away. Each time, at the last moment when I am about to allow the words I am hearing to actually reach my heart, at the very second when I am about to be human and truly feel what I am being told, I pull up out of the nosedive and right myself into position to fight for my child.

“Pull him from the elective,” I quickly said. I tried to keep it brief. “And wrap it up so I can get out of here,” I thought to myself. The room grew warmer, the oxygen in the air seeming to lessen with each breath. And then it happened. The tears came — and not just a few. For the first time in quite some time, I wept. In a conference room filled with strangers. With artificial light and stiff chairs and a school clock on the wall loudly ticking the seconds as they went by.

I wept for all the times I was met with a barrage of clinical terms for all the things I thought were just my little boy’s adorable quirks. I cried for all the birthday invitations my boys never received. My heart ached for all the afternoon phone calls from school relaying the difficult events that had happened that day. I wept for all the times my boys just wanted to fit in and be like everyone else, but couldn’t.

Because a mother’s sadness is like that, you see. Like a back that gives out on you without warning. For months and years you carry heavy things without recourse. Then one day you unassumingly reach for a pen and you are frozen.

I quickly gathered myself and was able to say the words once again. I wiped my tears and cleared my throat. “Pull him from the elective and put him in academic support,” I stated calmly. “Where do I need to sign?” We do what we have to do.

Being a nurse in quality assurance, I’ve read through endless medical records. Not long ago, I came upon a letter from an insurance company to the mother of a 10-year-old boy with autism. It was a letter stating they would no longer be paying for his therapy because the doctors who had reviewed his case felt that he had “reached his maximum potential.” I stared at those words for quite some time as they uncomfortably settled in my bones. Suddenly I was with that mother as she opened her mail at the kitchen counter with her children happily playing in the next room. I was with her as she herself read those words about her baby boy. This must have destroyed her, I thought.

But then I thought what was probably closer to the truth. The words taking her breath away like a punch to the gut. The tears almost coming, but then halted by her children’s requests. Her stuffing the letter back into the envelope and placing it with the piles of others. Her taking her children to the park and drafting another appeal letter in her mind as she pushed her son on the swing. Because that’s what we do.

I left that meeting on that gray, rainy day and hurried to my car. I had two doctor appointments to schedule, one insurance company phone call to make and three teacher emails to return before I was due in at work. I reapplied my makeup, checked all my boxes and walked into work an hour later with a smile on my face.

Later that evening, I curled up next to my son on the couch and broke the news of what was going to happen at school. We sat together in the sadness of it. But then we moved on to how accepting this help would make him even stronger, how with some extra support and his amazing intelligence that he would be an unstoppable force. He amazed me with the grace and courage with which he accepted the news. He always does.

I lay awake hours later that night staring at the ceiling. My brain raced furiously thinking of ways I could make up for this to my son. Maybe there was a video production class somewhere close by I could sign him up for. What if I picked up more hours at work to pay for a private tutor? There must be groups for older boys with those interests, I thought. I would look tomorrow.

Because, in that moment, I knew what I really needed to do. Alone in the dark, I let the tears come. This time I didn’t stop them. I felt the sadness to my core. I sobbed and I heaved and I let the pain seep through every inch of my body. I did not stop until there was nothing left. And then I prayed for the strength to be what my children need me to be. The strength to lead them on this path. To fight for what we need to, but to accept what we must. To honor the heartache, but to find happiness anywhere and everywhere we can. After all, that’s all any of us can do.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

1
1
0
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.