After a child receives a new diagnosis of Autism Spectrum Disorder (ASD), it’s natural for parents to be full of questions. The good news is that the autism community is full of parents who understand ASD and are eager to share their knowledge with those who are new to the community. We compiled 14 expert tips from individuals with autism, autism professionals, special education teachers, and parents of children with autism and special needs:

 

Chris Bonnello – Autistic Not Weird

Chris Bonnello is the owner and author of Autistic Not Weird. He was diagnosed with Asperger Syndrome when he was 25 years-old. Prior to his diagnosis, Chris had experience teaching both primary education and special education. Since receiving his diagnosis, he has become an award winning writer and an international speaker on autism. Chris says:

“I guess that the most important piece of advice I can offer to families is to define their children by their strengths rather than their weaknesses. It’s a very easy trap to focus on just the deficiencies and the struggles when it comes to autism, but if everything a child does is focused on their weaknesses, they’ll never get a chance to develop what they’re really good at. And a child’s self-esteem can rocket once they see themselves being really good at something.

There were plenty of reasons to have been negative about my prospects, going by the developmental report written about me when I was 4. I’m very glad my parents and teachers didn’t spend my childhood years just being sad about all my “bad points, “ and then being surprised when I didn’t reach my potential as a result of not focusing on the good.”

 

Erin Tracy – Behavior in Balance

Erin Tracy is a Board Certified Behavior Analyst and the founder of Behavior in Balance – a website that provides educational resources for parents. She has over 12 years of experience working with both teens and children with autism. Erin says:

“I think the biggest piece of advice I could give parents is to educate themselves.  This is for a couple of reasons.

  1. There is so much noise and inaccurate information out there, that it can be difficult to know what to do or how to best advocate for a child.  Researching reputable organizations and those that promote using evidence based practices is a good place to start.
  2. Sometimes I feel like there’s a perception that we, as clinicians, have it handled.  This may be our own fault for creating that perception or not involving parents enough. The truth is, parents play such an important role in a child’s progress. When we leave, who gets to manage challenging behavior?  

There are a lot of hours in a week outside of therapy time. Using that time to teach a child new skills or manage behavior can be invaluable to progress.  A quality BCBA should be providing this training but supplementing in-session parent training with classes or tutorials can be highly beneficial.

It’s important for parents to learn and understand what evidence based treatments look like, what their child’s rights are for services and in school, and how to carry out behavior techniques and strategies for teaching their child.”

 

Jessica Watson – Four Plus an Angel

Jessica Watson is the author and owner of Four Plus an Angel where she shares stories about her life, parenting, and autism. Jessica has experience raising a child with autism and shares her autism story on her website. Throughout Jessica’s time raising a daughter with autism, she has gained valuable knowledge. Jessica says:

“Appointments or school meetings that involve discussing test results or progress reports related to your child can be emotionally draining. Whether your child made little to no progress or added a new diagnosis to their list, leave that meeting reminding yourself that your child is the exact same, uniquely awesome person they were when you walked into the meeting. No test result or expert opinion will ever change that.”

 

Gina Badalaty – Embracing Imperfect

Embracing Imperfect, created by Gina Badalaty, offers many great resources for healthy eating and autism. Gina has experience raising a daughter with disabilities and autism and has found healthy eating habits can make a major difference in children’s lives. Gina says:

“Kids on the autism spectrum quite frequently suffer from food sensitivities and gut health issues. We have learned, the hard way, that my daughter is reactive to most forms of cow milk. It contains a protein – casein – that disturbs her sleep pattern. For many years, she could not sleep through the night, yet removing products containing cow milk reset her system and she began sleeping through the night in just 2 weeks.

If your child is experiencing behaviors and issues including sleeplessness, eczema, constipation, diarrhea, behavioral outbursts and more, you might want to see if they are reacting to foods that are not good for their system or if their gut is out of balance. A healthy, clean, low sugar diet can make a world of difference to your child!“

 

Mary Winfield – Growing as They Grow

Mary Winfield has experience working in Special Education as well as raising two children with special needs. She is the owner and author of Growing as They Grow. She writes blog posts on a variety of topics and offers advice on many topics relating to parenting. Mary says:

“I think my biggest piece of advice for people wading through the trenches of special needs parenting is to trust yourself. You know your child better than anyone else, and you are their momma for a reason. They need what you have to offer. People will tell you that you are doing it wrong, that you are messing them up, and that if you would just do “insert unsolicited advice here,” that it would be much better. Only listen to advice from a few trusted people, and then weigh it against your heart and what you know about your child. You are not going to mess them up. If you love them and never give up on them, they will have all they need.”

 

Amy H – Taking it Day by Day with Developmental Delays

Amy H is the author of Taking it Day by Day with Developmental Delays (and Autism) and is the mother of a son with autism, physical impairments, and mental impairments. In her blog posts, Amy discusses her adventures through life raising her son and shares helpful information relating to autism and developmental delays. On her website, she writes a letter to special needs parents. In this letter Amy writes:

“Don’t let the stress of raising this child eat you up inside. Don’t let it be the only thing going on in your life. You need distractors, and a chance to get out of your head. Take breaks from your child when you need them. Sometimes we just have to put him in his room and walk away to decompress. It’s okay. Please don’t try to bear the brunt of everything, because you don’t want to trouble anyone else with your child. Let teachers help. Let therapists and social workers help. They will lighten your heavy load. Let them be a part of your child’s life, they will make your journey more enjoyable.

Search your entire county and beyond until you can find a support group, and if you don’t find one, create your own. Seek out a counselor to touch base when you need to. When your child goes to school, get to the gym, or take a walk to combat stress. Get together with friends at least a few times a year. You need to socialize with others and feel normal again. Communicate at all times any stresses you are feeling to your partner/spouse, parents, siblings and don’t keep this stuff inside. Try to stay hydrated, get enough sleep and eat healthy when you can to help your overall well being. His pediatrician used to tell me, “You can’t take care of him, if you don’t take care of yourself.”

 

Tameika Meadows – I Love ABA!

Tameika Meadows is a Board Certified Behavior Analyst and the blog owner of I Love ABA! Her blog posts offer many tips and resources for understanding autism and ABA therapy. One blog post in particular offers excellent advice and strategies for making life easier for both parents and their children. This post is titled “My Top Ten List” and explains what Tameika believes are the essentials to everyday life for a child with autism. Some of the essentials that she discusses are creating structure and routine, creating visual daily schedules, using a choice board, and creating a cool down area. She goes further into detail about each of the top ten essentials and provides examples of how to apply them to everyday life.  

 

Jolene Philo – Different Dream Living

Different Dream Living is a website created by Jolene Philo which offers resources for those who are caring for others with special needs. She has experience raising a son with special needs and has gone on to become a published author and speaker for special needs. Jolene says:

“On the days when parenting your child contains no Hallmark moments, remember one thing. You stand between your child and the big, scary world he can’t understand, but you don’t have to stand alone. By seeking resources, advice, and support for your child you will become a better advocate and protector. So ask for help when you need it and give help when you can.”

 

Kate Hooven – The AWEnesty of Autism

Kate Hooven blogs about her life raising three children, one of whom was diagnosed with autism. Her website, The AWEnesty of Autism is filled with honest accounts of everyday life raising her son with autism, as well as tips to help other parents in similar situations. Kate, along with the help of her son and niece, developed a poster to help others befriend children with autism:


Credit: Kate Hooven. *Disclaimer: Per Kate’s request, no edits may be made to this poster.

 

Erin Hagey – You AUT-a-Know

You AUT-a Know, created by Erin Hagey, shares the knowledge that she has gained from her experience as a Special Education teacher. She bases her classroom on ABA principles and offers many resources for other Special Education teachers. Erin Hagey says:

“Look at your IEP team as just that, a team. Working with multiple service providers can be tough, but the more we can work together, the more benefit our students will receive. I love working alongside families to develop goals and objectives to make our students more successful at school, home, and in their communities. Working together as a team allows all members to share what is important for the growth and development of our students and I find that it makes for greater student achievement. Doing this is not always easy, but I suggest using open, honest communication as a key tool to build a collaborative team that can best support our students.”

 

Rebecca Branstetter – Thriving School Psychologist Collective

Rebecca Branstetter is the founder of Thriving School Psychologist Collective. Thriving School Psychologist Collective is a community of school psychologists who are dedicated to improving mental health services in public schools. Rebecca has over 15 years of experience as a school psychologist. She has written many blog posts and books sharing what she has learned throughout her career and also offers online courses. Rebecca offers advice for families deciding what school support is best for their children:

Getting a diagnosis of Autism can be understandingly overwhelming for parents. One of the first things to do to reduce overwhelm is to build your child’s school support team and find a “guide” in navigating the process for garnering the right supports at school. In the public schools, the school psychologist is a professional who can serve as a guide in the process. It is not always widely known, but public school psychologists are available to support families from ages 3-21, even if your child is not enrolled in a public school. You can contact your child’s local school district to find out who the school psychologist is.

One reason starting your journey in the world of deciding what the best school support options are with your school psychologist is that they are experts in not only diagnostic assessment, but also helping parents navigate the sometimes complex and daunting menu of options for their child. From general education all the way to special schools for students with Autism, the choices and process for getting the “just right” level of support can leave parents feeling overwhelmed and frustrated. Whether a medical professional or the school psychologist provided the initial diagnosis, ask for an appointment to meet to discuss the new-found diagnosis and learn the next steps. The school psychologist may also have knowledge of community agencies that offer ongoing support to parents of children with Autism.”

 

Kara Dedert – Live Better

Kara Dedert is mother to five children and the author of Live Better. One of her sons was born with special needs, and she discusses many topics relating to special needs parenting. She offers wise words and tips for parents in similar situations as her own, as well as a Facebook group for other mothers raising children with special needs. In one of her blog posts titled Your Child Needs Friends Too, Kara writes, “Not only does my son need friends, they need him.” It is important to remember that children on the spectrum and neurotypical children can both benefit from having a friendship with each other.

 

Alicia Trautwein – The Mom Kind

Alicia Trautwein is the author and creator of The Mom Kind. She has experience raising four children with different diagnoses, and she writes blog posts discussing topics relating to autism, special needs, parenting, and managing money. Alicia says:

“Remember, your child is the same child who walked into that office without a diagnosis that walked out with one.

Not only is it okay to grieve, it is normal.  We all have different steps in the cycle of grief (denial, shock, anger, sadness, depression, even relief).  You are not necessarily even grieving your child, but the idea of who your child might have been in your head.  What is important is that you actively move through the cycles of grief into action. As Dr. Rick Solomon of The Play Project says, ‘There is a feeling much worse than grief and that is the guilt of looking back on what you should have done.

You are the expert in your child’s life and their strongest advocate.  Though you may not be a doctor, you’ve known your child since day one. You know what they need and are the only one who is going to fight for your child’s needs. So do not doubt yourself!’”

 

Stephanie DeLussey – Mrs. D’s Corner

Mrs. D’s Corner is a website created by Stephanie DeLussey. On this website, Stephanie writes blog posts and provides resources for teaching Special Education. In her blog posts, she shares knowledge that she has gained from her experience as a Special Education teacher on topics such as disability awareness, parent communication, data collection, schedules, and more. Stephanie says:

My biggest piece of advice for special needs families is for them to 1. Become involved in the community where they live, and 2. For parents to become involved in their child’s education with information from outside of the school district. Do your homework, study up on the laws and what rights you and your child have under IDEA. In my experience, most families don’t know how much power they hold over school districts when it comes to asking for and getting the services their child needs to succeed.”

 

When raising a child with autism, it’s important to remember that many other parents are experiencing the same challenges. Thankfully, the autism community is full of parents and professionals who are happy to help others along the way in their own journeys with ASD.

 

For autism tips, check out our Autism Travel Guide.

11-year old Logan Joiner is traveling around the United States conquering his fear of roller coasters to inspire other kids with special needs to overcome their own fears. His efforts have earned himself the nickname of the “Koaster Kid.”

Joiner is diagnosed with Autism Spectrum Disorder and was nonverbal until the age of four. Children with autism are often hypersensitive to lights, sounds, textures, tastes, and smells. Growing up, Joiner struggled with sudden movements and loud noises. As such, he was never a fan of riding roller coasters.

In the beginning of June, the Koaster Kid bravely took on all 13 of the roller coasters at Six Flags New England in support of other children with developmental disabilities.

“We are riding all thirteen roller coasters here to raise money for Autism Speaks, and donating 113 theme park tickets so all the kids can experience the awesomeness of this park,” he told WWLP News.

Joiner has an impressive following on social media with over 10,000 subscribers on YouTube and over 2 million video views. He uses the outlet to document and share his roller coaster trips.

Above all, he hopes that his show of bravery will help other children with autism build up the courage to face their fears.

For Micah Miner, a 9-year-old boy from Illinois, an autism diagnosis hasn’t held him back from accomplishing great things, particularly in the gymnastics world.

When he was five years old, he took up gymnastics at the Edwardsville YMCA in Illinois. Micah’s father, Maurice, says he struggled with “information overload” during his transition into the gymnastics program, but he soon learned gymnastics was a natural fit for him.

“It’s allowed him to blossom as a social individual,” Maurice told Belleville News-Democrat.

After overcoming his issues with focusing and taking orders from his coach, Micah tested into the advanced class at the YMCA and soon entered a competitive team.

According to Micah’s parents, his autism can both help and hinder his gymnastic abilities. Many children with autism engage in repetitive behaviors, and mastering gymnastics requires a high level of repetition. His parents say Micah will watch videos of himself or other gymnasts for hours, becoming fixated on the ways in which he can improve his own performance.

However, this intense level of concentration can also cause Micah to become upset if he notices any sort of stumbling or extra steps in his performances, which “can hinder him in performance later on,” Maurice says. “Autism is a black-and-white world for him. He’s his own worst critic. With autism, that’s heightened.”

Nonetheless, Micah has excelled in the sport over the last four years, racking up an impressive number of awards. In 2015, Micah won first place in trampoline and rod floor at the Southern Illinois state meet. The following year, he placed first in double mini, trampoline and rod floor in the advanced category at the same Southern Illinois state meet. In 2017, he took first place in the advanced boys 9-10 division in the double mini, trampoline, and rod floor competitions, which officially qualified him as an elite athlete.

Now, from June 20-24, Micah is set to compete at the 2017 U.S. Tumbling and Trampoline Association National Championship in Madison, Wisconsin. Impressively, this will be Micah’s third time competing in nationals.

The Madison County Police Department has honored Micah with Sherriff John Lakin paying him a visit to recognize Micah for his achievements. Lakin says “although Micah is only in fourth grade, his accomplishments speak volumes about his dedication and passion to the sport,” the BN-D reports.

Micah is a bright example of how children with special needs can persevere through their developmental challenges to achieve remarkable things.

“How do I feel doing gymnastics?” Micah says. “Happy.”

The gymnastics star plans to take a break from training after nationals in order to spend more time with his family.

Jordan Keller was diagnosed with Autism Spectrum Disorder (ASD) as a baby, and 12 years later, he’s written and published a book to help others understand what it’s like to grow up with autism.

Jordan’s book, titled Jumbled Pieces: Autism, details the challenges he faced in his day-to-day life as well as the success he has experienced due to early intervention. Plenty of research has shown that the earlier a child receives intensive Applied Behavior Analysis (ABA) therapy,  the better the chance of being mainstreamed into classrooms with neurotypical kids.

Unlike many children with autism, Jordan is verbal. He wrote Jumbled Pieces “to help people understand Autism who don’t have it and to help those who have it,” his mother, Rebekah, said in an interview with KSDK TV-5. Jordan tells his mom that he feels very lucky that he can talk, and that people “need to know what scares us.” He hopes his book will give people a better understanding of what nonverbal children with ASD may be feeling. Jordan covers the important stuff – is autism contagious? Does it hurt?

Further, Jordan wrote the book to honor his doctor, Dr. Anderson, who he calls a “hero and personal champion.” Dr. Anderson is an orthopedist. Although his medical specialty isn’t specific to Autism, Jordan says he feels comfortable asking Dr. Anderson anything and knowing he will tell him the truth. According to Jordan’s book, one of the most challenging parts of his experience with autism is building close relationships with others. He says that his interactions with Dr. Anderson, as well as the encouragement and support of his family, have helped him improve in this specific area.

Acting as a voice for all of those who can’t be heard in the autism community, Jordan epitomizes the strength and giftedness that is at times overlooked in those with ASD.

Some other book recommendations from the staff at Action Behavior Centers are Let Me Hear Your Voice by Catherine Maurice, The Way I See It by Dr. Temple Grandin, and How to Think Like a Behavior Analyst by Jon Bailey and Mary Burch.

Russell Lehmann, a young man with Autism Spectrum Disorder, had an experience he’ll never forget at the Reno-Tahoe International Airport.  Lehmann was having what he called “the worst meltdown of my life,” but thanks to an American Airlines employee named David, Lehmann’s nightmare travel experience was transformed into a positive one.

Lehmann had missed his flight connection for the second time in two days, and after hearing his flight would be delayed, he began crying and hyperventilating. David saw just how upset Lehmann was and approached him to find out what was wrong.

As described in a Facebook post, Lehmann said, “I was barely able to get any words out. I believe I mumbled the words ‘I don’t know. I can’t think, I have autism.”

David immediately showed Lehmann compassion, letting him know that he could reroute his flight to make sure he got to Cincinnati that night and even offered to buy him a slice of pizza. About 10 minutes later, David came back over to Lehmann with the pilot of the new flight he could take.

“David had notified the pilot, along with the entire crew, of my situation, and he took it upon himself to clear out a whole row of seats so that I would be able to have a space to myself during the flight,” Lehmann said.

David walked Lehmann onto the plane before any other passengers boarded and introduced him to the flight crew. At this point, Lehmann was crying, but these were “tears of thankfulness,” he describes. “If it hadn’t been for David, I would not have gotten on that plane.”

Lehmann’s Facebook post reached over 95,000 people, and he says the main message behind the post isn’t about autism – “It’s about doing the right thing. About being a good person. About accepting others and reaching out your hand to someone in need, even if they are a total stranger.”

Lehmann is a speaker, author, and autism advocate. He was on his way to Cincinnati to give a speech, and because of David’s kindness, he was able to make it.

He concluded his emotional post by urging others “Show what you’re made of. Give a damn. Stand above all the fighting and arguing. Be brave and open your heart. Fulfill your moral duties as a human being. Be like David.”