10 Things Parents With Children on the Autism Spectrum Need to Know

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I’m a 41-year-old author, autism self-advocate and government official with a diagnosis of Asperger’s syndrome. When I was a child, there was no appropriate diagnosis for me, so my family and I were pretty much on our own. I encountered some frightening and abusive people in my 20s and had to fight hard to get where I am now.

To parents of children on the autism spectrum, I give you these 10 tips in the hope they will help you and your child have a better life than I did and to help you avoid the pitfalls I made.

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1. Many people think they know a lot about autism or Asperger’s, but they actually only know a little bit.

Parents can struggle with unsolicited and unwanted advice from many quarters. My mom had a procession of women who tried to mother me “better” than my she did. One of them even told her I would have been better off with her. If you deal with this, remember parents are usually the best judge of how to raise their child. Develop a pat response for the people giving the advice and only accept advice that helps.

2. When your child is newly diagnosed, you may be confused and desperate for answers.

As an adult on the autism spectrum, I can tell you it will most likely work out. Autism isn’t a curse or a plague; it’s simply a different way of processing the world and responding to it.

3. When your child is newly diagnosed, you may want to “fix” or “cure” it.

As you might imagine, there are a good many charlatans and latter-day snake-oil salespeople trying to make a buck from your desperation. There’s no known cause of autism and no “cure.” If someone tries to tell you there is and follows up with a sales pitch, decline.

4. Children on the autism spectrum are all individuals.

There’s a saying about autism: “If you have met one person with autism, you’ve met one person with autism.” Your child is their own person and is as different to other kids with autism as two children with brown hair are from one another.

5. Adults on the autism spectrum can do everything other adults do.

Adults on the spectrum can study, have jobs, drive cars, have relationships and raise children.

6. People on the autism spectrum can often be told we can’t do things or will never succeed.

These low expectations come from all quarters, but they can frequently come from a position of love and care from parents who don’t want their children to be exposed to stressful experiences or difficulties. Whatever you do, resist the urge to shield your autistic child from every difficulty. A little adversity can help build resilience and independence. You don’t want to give your child an easy childhood only to condemn them to an unfulfilled adult life.

That being said, some adversity isn’t helpful and only causes misery. Bullying is one example of this. It doesn’t build resilience and causes trauma instead.

7. You are not alone.

There are many other autism parents in the world and many good resources for autistic kids and their parents can be found online and in the real world.   

 8. Autistic kids aren’t all geniuses.

But neither are they all below average intelligence. And I believe intelligence is a poor measure of a person’s worth or chances in life anyway.

9. Autistic children and adults might sometimes be trusting and naive.

Even if it seems hard to discuss these issues, instill a good deal of self-protection skills in your child, since predators seem to be able to spot a vulnerable person.

10. Your child is your child.

Autism is but one of their attributes. Even if they might not say it in so many words, they almost certainly love you as you do them.

Follow this journey on Jeanette’s website.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.

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To the Best Friend Whose Pregnancy I’ve Neglected

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To my best friend:

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We’ve known each other since middle school. We’ve remained friends throughout high school, college, family losses, marriages, divorces and kids. In a twist of fate, you just so happened to introduce me, newly divorced, to your neighbor, newly divorced, and now we are happily married with a blended family of five — all boys! 

After one miscarriage and every complication imaginable during my pregnancy, including months of bedrest, our newest addition was born with hypoplastic left heart syndrome.  The only constant thing throughout was you, my best friend — just as you’ve always been.

So not only do I want to say, “Thank you” to you over and over until the end of time, but I also need to say, “I’m sorry.” When you discovered you were pregnant toward the end of my own pregnancy, you still stood right beside me through every moment of the unpredictable, frightening, whirlwind of emotions we all experienced anticipating the birth of my son. I feel as if I’ve completely neglected you throughout your pregnancy and not been the friend you were and are to me. 

Not that I’ve tried to — or Heaven forbid, wanted to — but I have. My sick infant son has taken all of my time, attention, even all of my emotions, to where I have little left to give. I haven’t been there for doctor’s appointments, to shop for nursery furnishings and baby clothes. We’ve barely discussed her arrival and how exciting it will be, and rarely have I even asked, “How are you feeling?” or talked about baby kicks and contractions. Throwing your baby shower sucked the life out of me. I dreaded it for weeks and still feel so guilty and selfish for feeling that way. It’s hard for me to see the gifts, the perfect nursery, and connect with the baby girl you’re about to be blessed with.

Let me explain why. I didn’t experience things like healthy ultrasound pictures, fun shopping excursions for baby stuff, a baby shower or professional pictures taken after the baby was born in all those cute little outfits. I haven’t neglected your pregnancy because I’m jealous or not happy and excited for you, but because I’m still grieving. I do have a beautiful, thriving, healthy-as-can-be baby boy, but I’m so consumed with the constant worry, anger, sadness and sorrow I often feel that I can’t find the joy and happiness I used to know. That I know is there for my best friend, my chosen “sister,” but I just can’t bring myself to express it. 

I wish I could have been the friend for you that you have been for me, the way we were for each other 10 years ago when we had our first babies. I hope you can forgive me and know I’m giving all I’ve got. I love you and your new baby as much as anything, and I’ll be there for you with anything you need. But for now, I’m still struggling. I still need you to carry me through as you have the last few months. 

I know you understand and would never hold it against me, because that’s the type of friend you are. But I felt like I just needed to say this to you: I’m sorry I may not have been what you needed and wanted from me. But I’m still here and always will be. I thank you and love you more than you’ll ever know. And I know our new babies will grow up to be best friends — just like our first babies are, and just like we are.

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Editor’s note: After sharing this letter with us, Marissa sent us this update:

My best friend just delivered her healthy baby girl via C-section, and I got to be with her the whole time, in the OR and all. Her husband works out of town, and the baby decided not to wait on him, so I was by her side. I believe I just made up for any time lost!

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines.

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The One Question I Needed to Be Asked as a Black Woman With Bipolar Disorder

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I believe being black with a mental illness is one of the hardest things to accept in the black community. Why? Because having a mental illness only means you’re crazy. That’s it. In my experience, there’s no room for understanding. There’s no acceptance. You’re classified as crazy and then you’re forgotten. How do I know? Because I have bipolar disorder, and for 11 years I refused to get help because I didn’t want my family and my peers to think I was crazy.

I had accomplished a lot when I was diagnosed. I was a college graduate, wife, mother of two small children, business owner and so much more. So I hid the fact that in 2004, I was told I had bipolar disorder. I was ashamed, embarrassed and angry that mental illness was threatening to tear apart my world. No one asked me if I was OK when I disappeared for months at a time and isolated myself from things. No one questioned when I’d go days without eating or sleeping. No one asked about why I would get aggressive or about any other of my erratic behaviors.

All I wanted was for someone to ask me how I was really doing. Do I need help with something? Am I OK? Anything. No one did. Instead, they just thought, “Oh, that’s how she is.” That label stuck with me as I ruined relationships, employment and business opportunities and other great blessings. I plowed through life like a bull in a china shop. But while I was losing my battle to be mentally stable, it seemed like no one cared. It’s as if black people didn’t have mental issues. We’re either crazy, cursed or no good.

Imagine that.

No one bothered to ask me the right questions. No one considered that I might need help. No one asked, “You’re acting out. Do you need to go see a psychologist or a mental health counselor?”

That’s the one question I wish someone had asked me. That question would have changed the course of my life. That question would have made me take a real look at my behavior, and could have driven me to get the help I so desperately needed. Instead, it wasn’t until my primary doctor noticed something in me didn’t seem right that I finally saw a mental health counselor. And even then, after I received my diagnosis, I refused to get treatment because when I told my husband and mother, they rejected the idea.

They didn’t know how much I needed to be asked, “What can we do to help you?” “Where can you get help?” “What does it mean to be bipolar?”

Those questions could have helped establish my support system. But I fought alone, trying to determine what was real and what my mind was twisting up. I experienced so much devastation because I was alone.

But I don’t blame them. I blame stigma. I blame societal ideations that I believe say only white people have mental illness. I blame the lack of education and the health disparities that still plague minority communities. These are the things that keep us from asking the questions to get help.

I finally started to get help in April of this year. I got tired of losing a battle with stigma. Now, I’m on the road to recovery. Now, I want others to know they can get the help they need. Now, I’m transparent and share my story because I suffered for so long in silence and denial.

Now, it’s my time to lead others into the light to make their tomorrow a better place to be.

To hear more of Ivy’s story, watch the video below: 

The Mighty is asking the following: What’s a question you wish you were asked as someone living with a mental illness? How would you answer that question if someone did? 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 Share Your Story page for more about our submission guidelines.

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The Proper Etiquette Guide to Gawking at My Special Needs Family

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When gawking at a family with a child who has special needs, please remember to do the following:

1. Be sure to wear a disgusted look on your face. This will help the family to feel at ease with the situation.

2. Walk right on up to the family and stand within their personal space without saying a word. Don’t forget about #1!

3. When walking by a child with special needs, make sure you do a double-take so that you can get a better look. Don’t worry, the family won’t see you!

4. Shush your child who openly asks an innocent question and turn him or her away ashamedly. Then do #3 when your child isn’t looking.

5. Inviting additional family members to your gawk spot is always welcomed. Just make sure you call for them loudly enough that the family of the child being gawked at can hear you!

Yes, this is all rather tongue-in-cheek — and these are all situations we’ve encountered thus far in our short time of having our daughter, Abby, out in public. Seriously, though, I hope people will consider how they would like to be treated if they were in this situation. Sometimes, I just get tired of being a spectacle. Don’t I have every right to take my child to the boardwalk and enjoy some time as a family?

This may not be the feeling of every parent of a child with special needs, but I would venture to say that most feel the same way we do: If you have a question, just ask. We are open books and love to tell people about the miracles being performed on our daughter! I would much prefer to answer a question than to have people catching flies with their gaping mouths. I feel like it’s much more polite to ask a genuine question than to “sneak a peek,” do the double-take (which I always catch!), or — the worst — openly stare in horror at our situation. Don’t you think we know that having a child on a ventilator is not a good thing?

We encountered a few Boy Scouts the other day who asked some wonderful questions about Abby’s tubes. We so appreciated their openness and willingness to ask about her instead of just staring. 

I’m not putting anyone down, and I don’t mean to condemn. I’ve been there. I used to be the one to shush my son when he asked why that man is in a wheelchair. I will even admit to doing the double-take. I never meant any harm by it, and neither do most people (the gaping-in-horror woman might have…), but I would encourage everyone to really consider how they would like to be treated in this situation. If you need some real-life experience, come hang out with us one Friday night on the boardwalk. I think our friends had a real eye-opener.

Because really, all we want is just to blend in with the crowd.

Follow this journey on Life as a Leach.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Share Your Story page for more about our submission guidelines.

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To the Woman Who Wants to Pray Autism Away

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I am autistic.

I am also rearing children who are autistic — along with non-autistic children who have various disabilities. Our home is swimming in acronyms that stand for all of the different diagnoses in our home. We are quite the “motley crew,” my loud, flapping, spinning, scripting, disabled family and I. And though it’s not always easy (which would be the case with or without disabilities), it’s authentic. We love each other. We strive to respect one another’s strengths, challenges, boundaries, and needs. We mess up at times. But we make it work.

In addition to being a family with various disabilities, we are also a large family, an adoptive family, a Christian family and a family of color. We stand out when we go places first because of our size and/or demographics, and secondly because sometimes the way some of us present is a little different than the norm. At times we’ve had negative experiences because of this (like being told to leave movies or plays). But generally the people in our lives are welcoming and supportive.

Our church is also a good place of support. Though not perfect, it strives to include people of different backgrounds and experiences and to embrace diversity, including disability. We enjoy attending there and are actively involved in our church. But something happened the other day that I need to address.

Recently there was a special performance at our church one evening, and we attended. The children typically attend classes designed for youth, but this was a family-friendly event, so I had the children with me. I was a little worried about one of my children (my youngest son) because the sanctuary uses lighting effects (dimming, etc.), and there is a lot of noise (praise team, live band, bass pumping out of the speakers) and a lot of people. So I was prepared to leave if we needed to. Fortunately, this was a “sensory-seeking” day rather than a “sensory-avoiding” day for him, so not only was he able tolerate the environment that night, it seemed to energize him.

The music and the movement enraptured him, and he wriggled out of my lap and climbed to his feet. He moved to a space in the aisle near me, but more in front closer to the stage as if to “feel” the music better. He grinned widely and swayed to the beat. He bounced. He clapped. He spun. My heart burst with joy watching my baby boy become one with the music. I could relate, as there are some things that capture me just as deeply. You see, autistics don’t do anything halfway. We are either all in or we are not in. I can get similarly lost in a book or in my writing or in other things I’m passionate about. When we’re engaged in something, it can be like an all-consuming fire. There is nothing else around us, and nothing else matters at that moment. Watching my child, I knew he was being propelled to move and to express his joy by something from deep inside of himself.

I didn’t worry about people staring or pointing or whispering because our church is not like that. If anything, I think I saw a few people smiling broadly at him as they noticed his joy and how he was worshipping freely and boldly.

When we left I stopped by the restroom before heading to my car. An elderly lady was in there washing her hands at the sink. I walked past her en route to one of the restroom stalls. She caught my eye and smiled at me, and I returned her smile. The woman, who appeared to be about 80 years old or so, was short and had kind, greenish-gray eyes and a sunburst of freckles across her nose. She then spoke. “Young lady, was that you with that little boy who was jumping around out there?” she asked.

“Yes, ma’am,” I answered with a smile. “That’s my son.”

“He sure is precious,” she said with an even bigger smile. Then she lowered her tone, moved a little closer to me and inquired, “Is he touched?”

“Touched?” I had no idea what she meant. “I don’t understand.”

“I was wondering if your son was touched. You know. Special. He seems different. Is he special?” she clarified.

“Special.” I didn’t understand “touched,” but I understood “different.” And I definitely understood what she meant by “special.” My smile fell.

“Yes, ma’am,” I replied softly. “My son is very special to me. He is a wonderful child. He is autistic.”

“Artistic?” Her brow furrowed.

“No ma’am. Not artistic. Autistic.” I struggled with how to make her understand, and decided to add, “Some people would say autistic and some would say, ‘He has autism.’ He thinks and acts differently.”

“Oh!” she nodded in understanding. “One of my great nephews has autism too. Can’t talk, but smart as a whip. Well, I’ll pray for you, young lady. And your son, too. I’ll be praying.”

“Thank you, ma’am,” I replied. “We could always use more prayers.”

“I will be sure to pray. Our God is a great Healer. He can heal your son. I’ll pray God continues to give you strength to deal with autism. I know it must be hard. God bless you,” she said.

I was at a loss for words. I didn’t want to be rude, but this was going completely wrong. “Ma’am,” I choked out, “I don’t need prayers to deal with autism. I understand autism because I am autistic, too. I don’t need you to pray for my son to be healed.”

“Of course not!” she exclaimed. “I am so sorry… You’re right.”

Relieved that she understood the offense, I smiled again. “Thank you, ma’am,” I said, and finally entered the stall.

As I was pulling the toilet seat covers out from their place on the wall of my stall, I heard the woman speak once more:

“Please accept my apology. I will not pray for God to heal your son. I didn’t realize you have the same stronghold. I will instead pray for God to heal both of you. By His stripes you are both healed.” I then heard the bathroom door swish open as she left the restroom.

I know the lady meant well. She was trying to be caring. But her words demonstrate a widespread belief and way of thinking that I don’t agree with and think is extremely harmful. It’s something that needs to stop.

Please don’t try to pray the autism away. I don’t need to be “healed” of autism. And my children do not need to be either. We are not autistic because of some sin, or some defect or some punishment from God. We are autistic because we just are. This is not an affliction. It’s a way of being.

I believe in prayer. I believe in healing. Feel free to pray for us. Just not like that. I believe God made us this way. We are not broken.

We need all types of different people in this world. We need all types of minds as well. The world would be boring if we were all neurotypical, or if we were all autistic, or if we were all gifted or any number of things. Just like the world would be boring if we were all white, or all black, or all male or all female, etc. There is beauty in our diversity. There is strength in it. And I believe when God looks upon it, He thinks it is good.

Please don’t pray for my or anyone else’s autism to go away. It is a part of who I am, how I believe God made me. I am fearfully and wonderfully made, autism and all. By all means pray for me, but pray for my health, my family, my finances, my spiritual growth, whatever; don’t pray that God takes away what makes me “me.”

Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway?

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Why I’m Considered a ‘Soccer Mom’ When My Kid Doesn’t Play Soccer

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I used to be jealous of those “soccer moms” running their children back and forth to games and practices. I used to get mad as hell when I’d hear them complain about a soccer tournament taking up their entire weekend. I used to smile but then cry behind closed doors when I watched their children play. I used to turn green with envy that they had children so able and willing to play, and then shed secret guilt-filled tears because I wished my child was like theirs.

But not anymore.

It’s taken me three years since my son’s autism diagnosis to realize that I am a “soccer mom” too, my child just doesn’t play soccer.

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You see, I do drive my child to and from practices several times a week, but we call our practices “therapy.” My child also has days where he gives it his all at practice, and he also has days where his head just doesn’t seem to be in the game. And just like your child, when my child’s name is called, he stands up and we both know it’s game time.

My son’s field may look different than the grassy knoll your child plays on, but it’s really not that different at all. My child’s “goals” may not be between posts dug into the ground, but I promise you he has them (he has many of them), and I promise you he tries his hardest to score. His boundaries may not be drawn onto the ground with white paint, but he knows they’re there and he knows when he’s reached them. And yes, he even has a sideline too, when he has caused a “penalty” or just needs a little time out to rest and recuperate.

I do get to cheer for my child, and you know what? He also has “fans” cheering for him too. Therapists, friends, other parents and even the receptionist give him an enthusiastic high five when he excels at something he’s worked so hard in achieving. When he scores a “goal” everybody stands, everybody claps and everybody can feel the excitement fill the air. Every “goal” is like winning the World Cup. If even just for a minute, I know my child feels like the star player.

No, I don’t get to sit on a set of bleachers or in fold-up chairs along a sideline, but I always get a front row seat. Just like you, I’m the first one there and the last one to leave.

My son also has a “coach,” and even though the correct medical term may be “therapist,” they have similar jobs. Just like you, I don’t always agree with his methods. I get upset when I think he’s pushing my child too hard. I get mad at him when I see my child getting upset and he refuses to let him quit. I may even raise my voice at him, walk towards him and point my finger in anger. But just like you, I know he’s only trying to help.

And just like you soccer mom, I also know the agony of defeat.

I know what it’s like to watch your child practice for hours on end, only to see little or no improvement in his skills. I feel the same way you do when you see your child drive the ball down the field towards the goal with nothing standing in his way and a wide open net for him to shoot at. I too hold my breath in anticipation, muscles frozen, and feel like the entire world is moving in slow motion as I watch my child get so close to scoring, only to have his shot miss or get deflected by an outside force.

I also know (all too well) what it feels like to hold my child as he cries, tell him “don’t give up, you’re doing an awesome job” and wipe away tears when frustration and anger consume us both.

I’m proud of my child every day just for trying. I’m proud of my child for pushing himself past his limits, but most of all, just like you, I’m proud to be called his mom.

So you see, soccer mom, we really aren’t that different at all.

Our children may play on different fields and they may strive for a different set of goals, but that doesn’t make them any less of a child. And it doesn’t make me any less of a parent. 

It took me three years to realize that the world is filled with “soccer moms” all driving their children back and forth, cheering them on, wiping their tears and feeling the triumph of a win and the agony of a defeat.

Yes, I’m a soccer mom too. I just don’t have the bumper sticker or the sweatshirt that says so.

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