Words of Wisdom from the Autism Community
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 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. A child’s self-esteem can rocket once they see themselves being really good at something.”
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.
- 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.
- 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.
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. 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. 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. 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.”
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:
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…the school psychologist may also have knowledge of community agencies that offer ongoing support to parents of children with Autism.”
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.
To read the original post, please visit www.actionbehavior.com