Healthy Habits: Autism Interview with Marcia Hinds

Autism Awareness month is April; one out of every 59 kids are affected by autism. Dysfunctional immune systems and hidden viruses & infections play a significant part. Autism is medical and treatable according to leading doctors and Robert F Kennedy Jr. Doctors who know how to treat autism medically know that once the body works, the brain follows.

Marcia wrote I Know You’re In There: Winning Our War Against Autism. This inspirational book is the story of her son’s recovery. “Experts” said Ryan would need to be institutionalized, but they were wrong. Ryan is now an engineer at a major aerospace company. Ryan’s recovery was not miraculous. It was the result of receiving proper medical care. Marcia shares their story of hope as only a mother can and will, helping others to RETHINK Autism. An autism diagnosis no longer has to mean “game over.” When a child’s health can be restored by treating hidden viruses and infections, then recovery becomes possible. Preview her book here.  

I had a chance to interview Marcia to learn more.

1. Why did you write "I Know You're In There – winning our war against autism?" 

I wrote Ryan’s story I Know You’re In There-winning our war against autism to help families understand that autism is medical and treatable. Hearing that your child has autism is terrifying. I don’t want anyone to feel as overwhelmed as I did when we were all alone and living on Autism Island.  It’s important that what happened for Ryan becomes the norm, rather than the exception. 

My son who was severely affected only began to make significant progress after we abandoned the idea that autism was a developmental disorder and embraced the idea of medically treating his dysfunctional immune system. 

The real truth about autism is that it is simply a collection of symptoms that look different in every kid. It results from an immune system that is not functioning right. Doctors don’t use the term “messed-up immune system,” but in reality--that’s what it is. When that becomes common knowledge, more treatments will be developed. That’s when more children will be helped and be able to learn what they couldn’t before.

What is the hardest thing about living with autism? 

One of the hardest things to deal with when you have a child with autism is that you don’t know the rest of the story. You have no clue how things will turn out. Not only do you have an awful day-to-day existence dealing with the behaviors of your child and the shortcomings of our medical and educational systems, but you are frightened beyond words about your child’s future.

Will my child ever be able to live independently? Who will take care of him after my husband and I are gone? 

How did it affect your marriage and your relationship with your husband? How can couples hold it together with all the stress autism brings? 

Autism puts a lot of stress on a marriage. My husband and I almost didn’t make it. There were a lot of arguments and family tension. Frank was convinced I was too soft, and I knew he was too tough. Back then all I thought about was helping Ryan, and any extra time went to Megan. 

Knowing what you know now, what advice would you give to a parent who just received an autism diagnosis? What do you want them to know?

Reward the behaviors you want to increase, and try to ignore (whenever possible) the negative behaviors you need to eliminate. Look for those rare moments when your kid does something right. Children on the spectrum are always being corrected and told what they are doing wrong. It is not always easy to identify what is rewarding for a kid who has communication deficits. Children who have autism do not find the same things rewarding as typical children. 

The best piece of advice I was given was to use what Ryan loved or obsessed about to teach him. For Ryan, that meant every lesson had to include one of the following: Elevators, cars, computers, technology, sharks, electric plugs, or light switches. It was also important to remember all children love hugs and praise, even if they don’t always show us that is true. For the skills that were especially hard for my son to learn, we used primary reinforcers. When we first started teaching anything that required motor planning like catching a ball or riding a bike, Ryan was rewarded with a Skittle or French fry.

Unfortunately, any parent embarking on this 24/7 assignment won’t have much of a life until their child reaches a certain behavioral level. Frank and I didn’t regain any semblance of a social life until Ryan was in fifth grade. If I had known he was going to recover, I would have had no trouble keeping the 24/7 pace. But it was hard to give up everything for years when his future remained uncertain.

I was just too overwhelmed and I didn’t include my husband as an important member of the team. I just wanted him out of my way, so I could fix the kid. If I had realized that ABA behavior therapy works on spouses too, I would have used what my husband loved to bring him around to my way of thinking. There would have been a lot less arguing if I had shown my husband the kind of time, appreciation, and respect he deserved. He loved Ryan too, but I usually forgot that.

These thoughts made me insane with worry. I went so far as to pick women for my husband to marry if something happened to me. How crazy is that? I just wanted someone to love my son warts and all. There were too many mornings I didn’t want to get out of bed to face another day filled with autism. The worst times were when my husband and I had no direction or plan. And there were many no-plan and no-hope days when we were hanging on by our fingernails. Frank and I had to choose. We could let Ryan drift forever into his own world or drag him kicking and screaming into ours. Choosing was the easy part. The hard part was discovering how to help our son and what the book is all about.

Are there other books and teaching things you recommend for parents?  

There are many good books, websites, apps, and videos about autism. I've included a few here but there is so much more. Here are some books I particularly like that explain autism and what to do about it:

1. Sharma, Melinda. A Parent’s Guide To The Common Immune System Issues In Autism Spectrum Disorder. Published 2016 This book has important information for you and your doctor. It includes test that you may want to ask your doctor to order. 
2. Dr. Herbert, Martha MD PhD The Autism Revolution New York: Random House, 2013 
3. Kozek, Jennifer Giustra Healing without Hurting; Treating ADHD, Apraxia and Autism Spectrum Disorders Naturally and Effectively without Harmful Medications. Changing Lives Press 2018.
4. Maurice, Catherine. Let Me Hear Your Voice: A Family’s Triumph Over Autism. New York: Knopf, 1993.
5. Millan, Ann Autism: Believe in the Future. You can read her book free on her website at http://www.autism-believe-future.com/
6. Romaniec, Mary Victory Over Autism New York, Skyhorse 2016

When I was looking for educational materials to use with my son, I used to hang out at the teacher supply stores. Our kids love workbooks because they are predictable. I liked everything Frank Schaffer did, but there are hundreds more. And the inexpensive workbooks you can buy at drug stores or other retail stores work too. Below are a few titles to teach the instruction techniques and lessons our kids need to learn:

1. Maurice, Catherine; Green, Gina; & Luce, Stephen. Behavioral Intervention For Young Children With Autism: A Manual For Parents And Professionals. Austin: Pro-Ed., 1996.
2. Barbera, Mary: The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders. Jessica Kingsley Publishers 2007.
3. Freeman, Sabrina; & Dake, Lorelei. Teach Me Language: A Language Manual For Children With Autism, Asperger’s Syndrome And Related Developmental Disorders. Langley: SKF Books, 1997.
4. Mannix, Darlene. Social Skills Activities For Special Children. San Francisco: Jossey-Bass, 2008.
5. Mannix, Darlene. Life Skills Activities For Special Children. San Francisco: Jossey-Bass, 2009.
6. Mannix, Darlene. Social Skills Activities For Secondary Students With Special Needs. San Francisco: Jossey-Bass, 2009.
7. Michelle, Lonnie How Kids Make Friends Freedom Publishing Company. 2000. (This inexpensive paperback was not written especially for families dealing with autism but has information all kids need to know to make friends.) 

The cheapest and most effective way to teach my son was by using technology. I bought every computer program I could made by the Edmark Company because their programs were linguistically based. When my son was playing Millie’s Math House, he was also learning language. My favorite game is still Thinkin’ Things One. These programs are still available and relevant today, because they have stood the test of time. They are also inexpensive because they are older.

I wish we had an iPad or smartphone when we were trying to teach Ryan all the things he didn’t know. Our kids love technology. As a result, autism apps are extremely helpful for managing your child’s daily routines and providing the motivation to learn. For individuals who are nonverbal or have limited verbal ability, these apps can be essential to help them communicate. 

Your child's speech teacher and other parents are also great resources. I got a lot of ideas on how to teach conversation from watching Ryan's speech teacher. Steal the stuff that works and do more of it at home. Borrow materials and remember to make it fun for your child. Don't forget to use what your kids love or obsess about to teach them. 

There are a multitude of websites and blogs that make recommendations about which apps are best to teach conversation skills, friendship, interaction skills, emotional awareness, and behavior management. There are no correct answers when it comes to choosing the right applications. You know your kid best and what motivates him/her. 

YouTube is a great tool for teaching many things your child needs to learn. It is also effective for teaching ABA techniques. The Listening Program (TLP), Fast Forward, vision therapy and Brainjogging are also great resources. In addition, the website for this book, www.autism-and-treatment.com is constantly being updated. Email me there and I will do my best to answer your questions and help your family any way I can. I want all kids to have what Ryan now has.