Autism Spectrum Disorder

Letty and Alana

South Dakota

Welcome to the world of autism! 

Receiving an autism diagnosis for your child can be overwhelming, at least it was for me.  After developing typically from birth to 15 months, my daughter’s behavior and ability to communicate changed dramatically.  She started exhibiting many of the classic signs of autism including lack of eye contact, having terrible tantrums in which she was screaming and crying inconsolably and banging her head on the wall or floor, she didn’t communicate, and sometimes she seemed to be in some kind of trance.  At 28 months she was officially diagnosed with autism.  I felt like my daughter had been stolen away from me.  It was so hard understanding and dealing with her behaviors, tantrums, and the inability to communicate with her.  Everything seemed to be a struggle.  I was overwhelmed and secretly hoped autism would just magically go away or that she’d outgrow it. 

It’s going to be ok. 

As parents, we try to do everything we can to help our children learn and grow.  When your child is diagnosed with autism, it makes you question everything.  How did this happen?  Did I somehow cause this?  Should I have done something differently?  Let me be the first person to tell you this is not your fault.  Trust in the fact that you did everything you could to love and teach and provide for your child.  There is no official cause of autism and at this point, does it really matter why or how it happened?  Autism is here and is now a part of your life, and that is ok!  Your child will need different kinds of help and may learn differently than their peers, but they will be ok! 

Think of the diagnosis or label of autism as a ticket to services.  The diagnosis is the first step in getting help for your child.  It will open doors to services and supports you cannot get without it.  Autism is only a part of your child.  Think about it as an attribute of your child.  My daughter has brown hair, blue eyes, loves books, and also happens to have autism.  It is a part of who she is but it doesn’t define her. 

Do your research.

There are a ton of treatment options and advice out there.  I know it can be difficult to know what to do.  Do as much research as you can before deciding on a new treatment or therapy.  Look for treatments that actually have evidence to support their outcomes.  Besides online searches, you can talk to medical doctors and other parents, visit a medical library, and subscribe to blogs.  Do whatever it takes to make the most informed decision possible.

Connect with other parents.

There are a variety of support group options available.  I encourage you to get involved in an autism parent support group right away, whether it be an online Facebook group or an in-person meeting.  Getting connected to other parents is critical because you will learn more from other parents than anyone else in the community.  They have life experiences that are invaluable and are typically more than willing to offer ideas and help.  They are your allies! 

Become an advocate. 

No one will ever know your child as well as you do.  Parents are the one constant throughout a child’s life.  You are going to meet a number of people over the years who will help your child in a variety of ways.  There will be doctors, therapists, educators and more who are professionals or experts on autism.  While they do have valuable advice and wisdom, they are not the experts on your child and their needs.  You are the expert when it comes to your child and you must become their advocate.  You are the most valuable and vital part of your child’s team.  Do not underestimate your worth and never be afraid to ask questions, ask for services, or to say no if you feel you need to.  You are navigating this world for your child and are ultimately responsible for finding and obtaining appropriate services for them.  I know it can seem daunting, but I know YOU CAN DO IT!

Become a detective.

As a parent of a child with autism, you will need to learn to identify the gaps in your child’s abilities and teach those skills or find someone who can do so.  Many behaviors (good or bad) are actually trying to communicate or accomplish something.  Analyze your child’s behavior to identify opportunities to improve their skills.  If you can figure out “the why” behind the behavior, you can teach the skill that’s lacking. 

Build your toolbox.

Visual schedules and learning tools are vital in teaching kids with autism.  Include pictures when they’re little and move to using words when they’re ready.

Find what is rewarding to your child and use that to teach new skills.  It could be a certain snack or song or screen time on a device.  Whatever it is, only allow them to have the reward when they comply or cooperate.  Finding their “currency” is the key.

Routines are important for kids, whether they have autism or not.  Creating routines for your child helps them know what to expect and helps day-to-day life become manageable.  Help them work towards mastering self-care routines to foster independence. 

Social stories are awesome!  They help with transitions and learning new skills.  You can make them yourself on literally any topic or problem behavior you’re trying to address.

Don’t make comparisons. 

It’s important to keep in mind the standard developmental milestones for what is to be expected at certain ages and stages.  You can use this as a guide to make plans to help your child reach those milestones but, don’t worry if your child doesn’t perfectly follow the standard timeline.  Focus on the skills your child needs to learn and not on what their peers are doing.  I’ve found comparing my daughter to others is unproductive and distracts me from what’s really important, her development as an individual.  Each child learns and grows at their own pace, with or without autism. 

Celebrate the small wins!

You will learn to appreciate and celebrate the wins, big or small, because many times you have to work so hard to see any progress.  Over the years, I’ve found that autism makes you appreciate the small things in life that people many times take for granted.  Just getting your child to look at you or call you mom is huge.  Appreciate the successes and celebrate and acknowledge the hard work you’re putting in to help your child.

Do NOT give up!

Don’t ever lose hope and resign to the fact that your child cannot or will not ever be able to do something.  Progress can always be made.  Focus on what you need to do now, but still have long term goals for your child.  You’ll be surprised by how much they change over the years!  When we started our journey, I never dreamed my daughter would be where she’s at today.  You’ll be amazed at what can happen.  The possibilities are limitless!

You’ve got this!

Angela and Danny

Missouri

Biggest Challenges

One of the biggest challenges I face as a mother of a child with autism isn’t the school, therapies, or even no communication. The biggest challenge I face every day is reactions from family, friends, neighbors, and the public. They ask, “Why is he staring at his hand?” or “He’s 3 and not potty-trained yet?” My favorite question is, “Is he deaf?” I respond with, “He’s autistic,” and wait for their reaction. To me, it’s not a big deal. He is a happy, healthy, active toddler who learns at his own pace. I still can’t believe the number of people that ask, “How did he get it?” or “Will he ever be normal?” I have learned to take that negativity and turn it into something useful such as educating myself or others.

Greatest Blessings

I cannot think of any blessings in particular since my son has come along, because there are so many. He IS my greatest blessing. He came into my life when it was full of chaos and turned it around for the better. He has given me the patience I never had, the confidence I could never find, and makes me want to be a better person. He doesn’t care what I look like, what I wear, what I drive, or where we live. As long as his needs are met, he is the happiest person I’ve ever met in my life. If only more people could be like him.

Words of Wisdom

Something that I’ll keep with me for the rest of my life happened on the hottest day of the year, inside a doctor’s waiting room full of people. My son was sick, and a woman sitting next to us was trying to help calm him down. As we talked and he cried, she told me her granddaughter had just been diagnosed with autism. I then told her about my son and his diagnosis, and we continued talking for half an hour as we waited. When my name was called, the woman patted my back and told me, “God gives special children to special people.”

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne

Betsy and Austen

Georgia

Biggest Challenges

There have been several challenges I have faced having a son with autism. To be honest, Austen’s diagnosis at age 3 of autism was a relief to me. I knew there was something seriously wrong when he pulled the door off the hinges in a rage at 18 months, was violent, non-verbal, self-injurious and destructive. When your toddler’s behavior changes so quickly right in front of your eyes, it can be alarming. I wondered what I had done wrong, what had made this happen to my beautiful son? For me, it was not a slowly progressing situation that I just did no notice. My son’s behaviors changed in a matter of a month. He was talking like a normal 12-month-old and then he just stopped. He went from hugging me and kissing me to biting me. I was relieved that “it” (autism) had a name, and made it my mission to understand him and help him. I was so relieved that I did not cause this to happen to him. I buried myself in research, studied the different education programs, hired every specialist I could, and reached out to as many parents as I could. I learned to understand Austen, and why he behaved the way he did. It is really a different way of life. I realized that effort required for Austen to survive in our world. My entire life changed.

One thing that really made me crazy was when people in public would stare at me and whisper about what a brat my child was, and complained about my parenting skills. Once I learned about ASD and that it was the autism and not Austen or me, I started actually giving out business cards that described ASK and gave a website for strangers to go to in order to learn more. This stopped the dirty looks and rude comments. Once a stranger learned that he had autism and I handed them a card, the looks on their face were priceless.

My biggest challenge through this entire journey was getting appropriate services for Austen. This is one issue I really feel strongly about. When dealing with the school district I faced adversity in every direction. I wanted an appropriate education for my son, and they refused to do this. I pulled up my sleeves and fought the fight. I am still fighting, it is endless. I am amazed at the lengths some schools will go to in order to deny our children an appropriate education. The obstacles placed in front of us have been numerous. It has been an emotional roller coaster for me as a mom. I am one of the only people who truly understands Austen, and I know what he is capable of. His education is something I feel very passionate about. I know he is very intelligent and can be a functioning adult with the right education and intervention. Unfortunately, there are few educators who really understand ASD.

Being his mother and advocate has been the biggest challenge in my life. It has taught me a great deal about things I never dreamed I would have encountered. It was extremely frustrating and confusing to navigate through the system. It continues to be a daily struggle, but I feel more confident in my own advocating abilities now. No matter how difficult it is, I continue to fight for Austen and his education. Austen needs me to advocate for him so that he may become the functional adult I know he is capable of. So, I gave up my career, quit my job, and started focusing on Austen. He did not have another chance. I was it. Giving up has just never been an option for me. I owe it to Austen, I am his mother.

Greatest Blessings

I have been blessed with Austen. He is a beautiful, smart and loving little boy. Everything he has accomplished is a miracle to me. He went from being non-verbal to speaking in 6 word sentences by the time he was four. When the right educational program was put in place for him, he just exploded with knowledge. He soaked up the learning like a sponge. It was like he was shouting, in his own way, from a mountaintop, “See, I am smart. I can do it! I just needed to be taught a different way.” I don’t know of a prouder moment than watching my son playing baseball on a field with typical kids and loving the attention and conversation with the other kids. Or, when he made eye contact with me and said, “Mommy.” These are little things many parents of typical children take for granted. These are moments that are so precious to me, because I know how hard Austen had to work to accomplish these things. I feel blessed that he is so affectionate towards me. I know that could be different, because it is for so many of my friend with ASD children.

I feel blessed that I have such a wonderful, accepting family who truly has taken the time to love and accept my son for who he is, not the label he wears. I have lost many friends through this because they did not understand autism. I feel blessed though because I found so many new friends who really care about Austen and I and love us no matter what. I found therapists for Austen that have become close friends. I cannot thank them enough for just doing what they do. My son’s life has changed because of his Applied Behavioral Analysis (ABA) team. We have had to legally battle our school system concerning Austen’s educational services. Austen’s attorney is an exceptional woman. I feel blessed to call her my friend. It was like God knew what we were about to endure, and put the right people in place to support us through it. The journey that Austen and I have walked together has forced me to become more courageous, more humble, and more patient. I am thankful for this. I was blessed with a son who has taught me more about myself with each passing day.

Words of Wisdom

I would advise other parents to become very knowledgeable regarding your rights and the rights of your child concerning the law and educational services. It is amazing what schools try to get away with concerning our kids. Another important thing is to remember to take care of yourself. Rest when you have the opportunity. Get out and do things for yourself. Reach out to other parents with children with autism, it can be so helpful and comforting. Always trust your gut instincts. I have found that my gut instinct is usually correct. Think outside the box.

There is a great deal of research and suggestions for children with autism. Not every suggestion works with every child. Sometimes you have to modify or individualize certain things for each child. Read everything you can so that you can be informed about all of the different interventions and educational services for your child.

Lastly, don’t beat yourself us. You didn’t cause this, and you cannot fix it alone. There are so many people going through similar situations, and there are caring people out there who will help. We can all help each other by reaching out and sharing our experiences honestly. Educating others and helping others can only make this journey easier for those whose children will be diagnosed tomorrow.

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne

Christine and Peter

Massachusetts

Biggest Challenges

When Peter was born there was no denying he was perfect. Ten perfect fingers and toes. He relished everyone and everything. He loved Dougy, the little boy next door, the most. Our first born was more than we had hoped for in every way. We have had the joy of this child. He was our gift and we recognize this and cherish him in our hearts. I remember what his voice sounded like… and it is beautiful.

By eighteen months, he was so very different from the effervescent child we gave birth to. He had disappeared starting at fifteen months and was diagnosed at nineteen months. He no longer recognized the boy next door. The new child, in peter’s body, was so much needier, and determined to exclude us from his world. With little to no subtle social gestures, it became hard maintaining more than a moment of his attention.

The biggest challenge was putting one foot in front of the other while desparately hoping for our child to return. My boy sang, had an imagination, and it was obvious how everything in life excited him. What happened to him? What stifled him? Could this have been avoided? This is life, not just ours, but the life of many people. Where are the answers?

Greatest Blessings

Often we are admired by loving people trying to understand what it is like to be in Peter’s life daily. I am always stunned to hear this because every day we wake up to Peter and his limits. He wasn’t given an option and neither were we. We got through those first years, coping with all the unanswered questions… because of our love, inexhaustible love, and never wavering love. A love more overwhelmingly a part of us than any situation Peter’s disorder could put us in. My husband and I are a team; our goals are clear, and we are united. We don’t allow anyone to divide our attentions.

I have become a teacher, taking every opportunity to teach strangers, children, institutions (school districts, community service providers), maître d’s, security at airports, and my child, Peter, what is appropriate. Throughout this, I have acknowledged everyday angels who quietly come up and ask if I need assistance when my child has two handfuls of hair in his hands, or who have let us slip past even though the child “looks normal” but really needs to go first. Peter is non-verbal, and we feel his frustration daily.

He is now eight, strong, tall and handsome. He has personality, a kind heart and love that catches our breath daily. He had regressed every year for four years after his first regression, but now has had a year of progress. Assessments tell me he is more like a two year old, which is definitely better than a nine month old. Hope is eternal.

Words of Wisdom

When this all started I cried each day. Then I realized this happened to Peter, my child, my baby, not to me. I owed it to him to learn the early intervention ropes, the alternatives to treating his disorder and for enlightening all who work with him to demand and expect more from him. I am his mother and take pride in every sign of progress, become bear-like when I feel he is threatened, and am thankful to be so fully a part of his life.

Looking back over the past six years, I realize that I now need to understand how Peter’s condition has affected the lives of family and friends. It is time for me to help them get to know Peter. I am amazed at how many people have admitted to me that when he was younger, they thought I was making up problems. Not they admit it was good I was so bull-headed about his deficiencies. It is forgivable not to understand, not wanting to be involved; it is very forgivable when you realize that it is never too late to be more a part of his life now.

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne

Christy and Terry

Colorado

Biggest Challenges

A nagging feeling that something just wasn’t right.

Why is Terry the only one screaming when I put sunscreen on him at the park? What are these stomachaches that keep him awake for hours at night? Why won’t he say “mama”and “dada” anymore?

Anxiously waiting to hear what our pediatrician said at Terry’s two-year checkup.

“Don’t worry. Boys develop language later. I’d wait another 6 months before getting a speech evaluation.”

Still feeling that now-familiar knot in my stomach.

What if he doesn’t start talking? Will I ever hear his voice? Will he ever want to play with sand, play-dough, or finger paint like other kids?

Disbelief from friends and family when we voiced our concerns.

“Kids develop at different times.” “His Uncle Ken didn’t talk until he was 3. Even Einstein was a late talker.” “Naw, he’s a smart kid.” “Don’t worry so much.”

Sharing the diagnosis and receiving what can only be described as sympathy cards.

“He doesn’t look autistic to me.” “You’d never know it.” “Autism is like ADHD used to be. Now everyone thinks they’ve got it.” “You don’t want to get saddled with a label.”

Fearing Sunday school, playgroups, and childcare where his symptoms might be misunderstood as misbehavior.

“I can’t get that kid to come over and wash his hands. He won’t listen to me!” “Your son refuses to follow directions. Does he have ANY rules at home?”

Being thrown into the role of educator and advocate while still going through our own emotional processing of the diagnosis.

I don’t want to spend the day fighting with the insurance company. I don’t want to have to know what our rights are before we meet with the school district. I don’t know what caused Terry’s autism. I don’t know what will happen to him… to us. I don’t know what you can do to help.

Regular parenting challenges seem insurmountable.

How long will I have to take him to the bathroom every 20 minutes? Will we ever be able to cut his hair when he is awake? Will we always have to visit a new doctor’s office ten times before our first appointment so it becomes familiar to him? Will he ever sleep through the night?

Overwhelming responsibility and guilt.

Am I implementing enough of the right early intense interventions? Was it a mistake to vaccinate according to our pediatrician’s recommendations? Should we have known we were passing on bad genes?

Struggling with trying to maintain a healthy, balanced life for all of us.

Will I ever have a day when I don’t feel guilty for not making it therapeutic enough? Will we ever have the confidence to think about having another child? Is it even possible to catch my breath and have time to focus on my goals and career?

Greatest Blessings

Loyal friends who bravely broke through my denial.

“I noticed Terry didn’t really look at me when I asked him about his magnets.” “What did your pediatrician say about Terry’s speech delay?” “In my practice, we suggest getting an evaluation right away.” “I would just want to be able to rule out anything serious… like autism.” “It couldn’t hurt to check it out now instead of waiting… and it might really help.”

Compassionate, knowledgeable professionals who have become part of Terry’s team, part of our family.

Terry watches out the window when I tell him his OT, Kate, is coming over. This music class is perfect. No one bats an eye that Terry is too overwhelmed to participate.

Becoming so tuned in to Terry’s development that we can look at the tiniest little step with great appreciation and pride.

If our child had been typical, would we have taken all this for granted? Would we have celebrated his first bite of birthday cake, finally, at age 3? Would we have cheered at his first request for finger paint? Would hearing him say the words “bubbles” and “blow” bring tears to our eyes and hope to our hearts?

Finding child care workers and babysitters who may not have backgrounds in autism but whose caring and generous hearts responded with:

“So, how can I help Terry?” “How can we make this a happy, safe place for him?” “I just love working with Terry, please don’t stop coming here.”

Friends and family who continue to welcome us into their lives when we feel a bit removed from the world.

“Tell us what we can do to support all three of you.” “Let’s get our kids together again for a play date.” “Please bring Terry along!”

Working together with his father, my husband, to meet Terry’s many needs.

Did he get much vestibular input today? He is just spinning around in circles. Don’t forget to give him his supplements after he eats. Guess what? We went to the shoe store and Terry actually let the guy measure his foot! I need a break. Can you take over for a while?

Feeling blessed every single day to get to spend it as Terry’s mom.

“Come, Mom!” he says when he wants me to get the puzzle we do together. “I want Mommy lay down,” he says when he wants to snuggle or fall asleep. “Mom,” he says is his sweet voice and I think, “Wow… that’s me.”

Words of Wisdom

Accept the challenges.

It is work. It is crazy, busy, hard and emotional work to be a parent of autism. I am learning how to be the parent Terry needs me to be.

Find the blessings.

I have a tiny window into Terry’s world. It is a window that is slowly growing larger. With every little success, we celebrate. With every new day we look for magic and joy together.

Hold onto hope.

Autism is a part of who Terry is and of the journey we are on. It is a package deal and I wouldn’t trade it for anything.

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne

Deborah and Stacey

Georgia

Biggest Challenges

Our family’s biggest challenge with Stacey has been multi-fold:

• Parenting Stacey through medication changes, dealing with bouts of aggression in the past, addressing severe and inappropriate behaviors in addition to advocating for certain educational services and personal support services for Stacey are all on-going dilemmas. Stacey is non-verbal which makes communicating with her almost impossible. She has minimal self-help skills, so she needs a lot of hands on, daily support. She requires basically one-on-one care in school and out in the community.
• Building trust in school staff members and respite providers has proven to be a challenging task also; I am very particular about her well-being and daily needs to a point of this being a big stressor as her parent.
• Finding appropriate summer camp and after school services has also been very challenging due to her level of care- there are not many camps and programs that will take the severe autistic population without support and that comes at a high price.

Greatest Blessings

Our blessings with Stacey have been more than we can count. Stacey has no physical handicaps. She does not require a wheelchair or any walking devices. Stacey is now able to attend school daily with minimal issues- unlike the past. She also enjoys her great gross motor skills; she participates in an adaptive softball league (The North Metro Miracle League). She also participated in the Georgia school Special Olympics in elementary school. She enjoys her independence when she just wants to be left alone. Toileting is not an issue at this time, and she has a very high tolerance for pain. Because of her disability, our greatest blessing is that Stacey has made us a very close and humble family. We have a lot to be thankful for. She has a loving and caring big brother, Steven, and little sister, Brittany. They really adore her!

Words of Wisdom

For anyone who has the responsibility of caring for an autistic child, recognize that it can be very demanding and challenging, but it can also be very rewarding. Early intervention, education and advocacy are key! Learn everything you can about autism- there are various levels and it’s individual-based as far as the needs and the daily care. Always show the autistic child/person actions and words of love, encouragement and support. Give lots of praise and never, ever give up hope. There will be a better tomorrow. Keep praying!

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne

Jennifer and Ben

Washington

Biggest Challenges

For me the biggest challenge is deciphering behavior. Ben is high functioning, so he has a lot of skills including language, albeit delayed. I find myself thinking, “Is this autism, or is this being 4?” Since Ben learns in his own way I have to be creative in helping him learn how his behavior affects others. Sometimes it would be nice to say, “Please don’t do that, it isn’t nice,” and to have him fully understand.

Greatest Blessings

I believe the greatest blessings are the lessons we can learn from Ben. I believe God allowed Ben to be autistic so that those around him will learn the lessons well. His siblings learn compassions, patience and other ways of doing things. I learn patience and not to take the little things for granted.

My other children are very verbal, and from an early age I heard, “I love you, mommy.” I waited 3 years to hear that from Ben, and I still remember the date!

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne

Jennifer and William

New York

Biggest Challenges

The biggest challenge for me was acceptance. When I heard my pediatrician say that we had to have an evaluation to rule out autism, I was shocked and devastated. At the time, my son was only 15 months old and I was consulting with her about him receiving speech and occupational therapy. I was distraught that he was not talking or playing with toys and that he hated being held. I knew my son had delays, but I never expected this. I knew nothing about autism; except for a few people I had encountered who were severely impaired. While waiting to a diagnosis, I spoke to every therapist and teacher I knew and read every book I could get my hands on and despite the fact that he had all but one symptom (self-injurious behavior), I was still hoping and praying it was not true. When he was diagnosed “classically autistic” at 20 months of age, it felt like the bottom of the floor had fallen beneath me. It was soon after that I accepted the diagnosis and began working harder than ever to help my son to learn and thrive.

The biggest challenge for my son was accepting and giving affection. That was heartbreaking because I would hug him or pick him up or touch his hand and he would cry and push me away. It took me 2 months of practicing every day to teach him to walk with me and hold my hand. I used to hug him and give him a squeeze and say “I love you and you are going to love me back” while he flapped his arms and screamed. I would cry too. Eventually, with a lot of perseverance, behavior modification and occupational therapy, at the age of 2 ½, my son began enjoying being hugged and kissed, tickled and cuddled. He kisses and hugs all the time now and he loves it! Even though it has been a while, every kiss and hug still thrills me like the first.

Some of our current challenges are communication, socialization, and imitation. My son can imitate words, but refuses to speak. He seldom says a word without prompting. He engages in many self-stimulatory behaviors, he avoids interaction with others. He wants nothing more than to retreat into his own little world and I am constantly encouraging him to use his words, act appropriately, and stay focused and engaged.

Words of Wisdom

Allow yourself to feel what you have every right to feel: sadness, frustration, hopelessness, and fear. Only when you deal with what you are facing can you really accept your child for who they are at that moment and gain the strength to rise above this devastating diagnosis to lovingly teach and challenge your child to become the best person that they can be. Educate yourself as much as you can. Talk to experts, especially therapists and parents. Be proud of who they are and how hard they are working to become. Always use your instincts, your mind, and you heart when making important decisions about therapy and education.

Excerpt taken from the book Autism- Heartfelt Thoughts from Mothers by Judy Lynne