12 Things I Wish I Knew When My Child Was Diagnosed With Autism

Written by a mother of 3 children; one of whom, Sam, has been diagnosed with autism. The advice in this book consists of things I wish I had known earlier. There have been many people who have helped me in my journey and I wish to thank some of them:

The Beginning

When you are pregnant with your first child, you research through books or the internet to learn what will happen, what you need to do, what is normal. You ask your friends or family members who have gone through childbirth to learn what it is like and what to expect.

The day comes, your child is born, and now you are a new parent. Once again, you turn to those who have traveled the path before you. “ Is this normal?” “What do I do when my baby won’t stop crying?”, “Are they supposed to stay up all night.? Your friends, family and doctor all give you great advice about normal habits of sleeping, eating, pooping and crying. There are countless books and baby magazines that have articles with helpful hints for your new baby. You feel connected to others because you share an experience.

If your child has been diagnosed with autism, there is no family or friends to go to for advice. There are no magazine articles about what to do when your child is toe walking, dragging their head on the floor, only eating 2 foods, screaming, hitting, biting or constantly spinning things. You feel isolated and helpless.

Welcome to the birth of your new life! Yes, things are different with a child with autism. This article will hopefully be a few words of advice from a parent a little farther down the road who has had the same struggles you are having right now. The words of advice are either things I learned the hard way, or advice that was given to me that helped me.

Grieve and then GET OVER IT!

You may feel like you have lost a child. You may feel like your life is over. You may feel hopeless and depressed. This is normal. Your grieving process may take a few days, a few weeks or a few months. Don’t let it take forever. You will miss some amazing things.

It took me a few weeks, and every time I said the word “autism” or someone else did, it made me cry. I had to go through the grieving process, but some people do not. For a few of my friends it was a relief to find out they were not doing anything wrong, that their child was different and now they knew why. They did not even grieve for one minute.

You have strength in you. Draw from that strength. You are a parent of a child with autism. Fight. Fight for your child, fight for what is right for him or her. Fight for your child to have the best possible life. Fight for your family. Do not lose hope.

Autism is part of your life, and it is not and should not BE your life

Do not isolate yourself. It is easy to fall into the trap of thinking no one understands. I have many friends who have a child diagnosed with autism that isolate themselves and lose friends because they believe that no one understands. No, they don’t understand, but let them be there for you. Keep your friends as long as they are supportive.

Find a local support group and if you can’t, start one. There are a lot of online groups and support boards, if you don’t want to participate, just read. I actually met most of my friends through an online support group. We get together whenever possible and just hang out. If I want to say what my child is doing currently, that would weird out any other person, they understand. It is comforting to know that someone else’s child is doing the same thing or has done the same thing.

The divorce rate for parents of special needs children is extremely high, too high. Just as your child needs therapies, you as a parent need three things.

1. Date night - go on a date with your spouse or significant other. At least try and make it a monthly if not bi-monthly date. Make the time!! Share something you enjoy, get away from your responsibilities for a moment. Hire two babysitters if you have to. A date is cheaper than a divorce lawyer, a counselor, or prescription drugs.
2. Alone time - schedule time to be alone or do an activity for yourself. Just you. Whether it is taking a class, going to the gym or browsing a bookstore for a book, make time for yourself. You are important. The world is not going to come to an end if you spend a few hours on yourself.
3. Socialization - whether this is making time for a friend for lunch or going to a support group meeting it is important that you connect with other people on some level.

Do not sacrifice your relationship or yourself on the altar of autism. This journey is difficult enough without having to get a divorce or losing your mind.

No comparing

As with a typical child, so it is with a child with autism, no comparing. Your child is developmentally where they are at right now. Making yourself or anyone else feel bad about that does not help. Do not compare them to typical children, do not compare them to other children with autism.

Celebrate the successes they have. When they learn their first word or sign it is a good day! When you make a trip to the grocery store with no tantrums, celebrate! When you make it through the day without your child hitting you, celebrate! Every success is a step toward your child having a great life.

Be a family

It is easy to get caught up with all of the biomedical, therapies and research and forget that you are a family unit! Do regular family things, go to the park, go to the movies, go to the store, go to play groups.

About now you are probably saying “ Yeah, right! Easy for you to say. My child tantrums, there is no way I can do that!” or “ I have other children, I can’t handle my other children and my child with autism.”

At first go with the knowledge you may have to leave in 5 minutes. You will not be as frustrated having that knowledge. I had a babysitter take my son to the movies several times before he actually made it through the movie ( dollar or discount movies work great). I dropped her off with my son and gave her my cell phone number. The first time he was done after about 15 minutes, the second time he made it ½ way through the movie. Now, my family goes to movies all the time, without extra help. Break each activity down to a shorter activity and be willing to leave. You can start off with having your child practice with someone else. Build it up until they succeed. It took us about 18 months of him trying to make it through a movie.

Do not translate this as your child can do anything and everything right away. If your child has sensory issues do not take your child to a crowded mall or baseball game. Chose your family activities carefully, and take it slow. Change takes time.

Let me be a kid

Try and involve your child/ren. When they were smaller I would make a short grocery list with pictures on it. I would have my son with autism hold it and try and match the pictures on the list and the items we needed. The first list we tried was 3 items long. Milk, bread and bananas. Now, I can go with a large list and he enjoys helping me find the items.

Use other children to improve socialization. Our children model after the children they are around. If you want them to model typical children you should make opportunities to have your child interact with typical children. While my husband was at work, I hired a neighbor girl to come to the park and watch my two typical children while I followed my escape prone son around. We got to the park and he would run and play on the play equipment. At the time my son was nonverbal, and when we were at the park, I would walk up to another child and say “ This is Sam, he thinks that you are so cool when you go down the slide, can you show him how to go down?” or “ This is Sam, what is your name?” I would be the voice for my child, say the things he could not.

I would also bring things that would be shared activities to the park such as sand toys and balls. I would bring plenty of extra shovels and buckets (exactly the same, so there was no fighting over toys) and ask the other children if they wanted to play with Sam and his sand toys. This helped with parallel play.

You may think, “Why should I do it? My child does not get it.” I am here to tell you that they do. When my son was three, I thought the exact same thing. I continued on the path, thinking that he did get it. My son has just finished kindergarten this year where he was in a typical classroom with typical peers, unaided.

Be Consistent

It is important that you maintain the same reaction to situations. Children with autism generally do not know how to “read into” anything. If he throws a cup on the floor and you yell at him the first time, cry the second time and leave the mess the third time, your child will become confused. He needs to know that when something happens exactly what the result will be. When Sam knocks over a cup, accident or not, he knows what will happen next, he cleans it up (at first I had to help him, hand over hand).

I occasionally break the discipline rules when I am tired with my typical children, but with my child with autism it is essential that I maintain the rules. If anything, I have been more strict with my son with autism than my other two children. He craves structure, routine and consistency.

For a period of time when he was not able to communicate, he would hit me. He was frustrated, I was frustrated, and the situation was difficult for both of us. I created a cause and effect that was consistent and immediate that worked. When he would hit, I would immediately but gently hold his hand (the one that hit me), wait until he was frustrated and say “No hitting” and let go. I did this consistently and he learned if he hit me I would hold his hand. He did not like his hand to be held and eventually stopped (when I say eventually, it was a few months of doing this daily).

Be consistent also by following through with your therapists recommendations. We have been able to improve his communication and sensory issues by working on them every day, rather than expecting one hour of speech or occupational therapy to fix everything.

“I’m not retarded!”

Unless your doctor gave your child a dual diagnosis of autism and MR, your child does not have mental retardation. Even if he did give your child a dual diagnosis, don’t short change your child.

I know a woman who was visually impaired and when she was at her 4th grade graduation she received an honors award for having the highest scores in the class. Her mom said “ Wow, I guess you are smart!”

When had it occurred to this mother that just because her child had a disability that she was not smart? How sad is that when your own parent doubts your ability.

Be your child’s cheerleader. Your child is smart and they have value. You have no idea how smart your child is. Assume they are. Because if you are wrong, and assume your child is not smart, what a waste of potential.

I recently met a man with autism and by looking at him you would think he had MR. He had difficulty walking and constantly drooled. I watched as he typed in complete intelligent sentences with an augmentative device and even backspaced when he misspelled something. This man is very smart, his body just does not work as well as he would like it to.

No Excuses!

Manners, your child needs them. Do not excuse bad behavior as symptoms of autism. When they learn to communicate whether it is sign or speaking, their second sign or word should be please. My son’s first sign was “more” the second was “please”. Once he had down the sign more and was using it, we then had him sign “ more, please”.

One example of excusing bad behavior:
I had a friend over for play group and she excused all of her child’s behavior as “he has autism”. Her child started throwing toys at me, more specifically my head. Again, I heard “He can’t help it, he has autism.” By the third block, I had to physically redirect him by turning his body in the other direction and saying “throw the blocks in the box” and did hand over hand showing him how to throw them into the box. He then enjoyed throwing them in the box.

This child was clearly intelligent, knew what he was doing and was waiting to see where the boundaries were. Just as typical children push the limits, so do our kids. Don’t let them engage in behavior that will hurt others or themselves and excuse it as autism. Sometimes, our children do not understand our words and need to be gently physically redirected.

Communication issues

Can you imagine if a parent with a child with a hearing impairment expected them to hear? Or if a teacher who spoke only French expected her English speaking students to understand her lessons? It is the same with our children.

Our children speak a different language; they have a different way of learning. Learn their language. Learn how to teach them. You have just as much to learn about them as they have to learn about the world. If you do not give them a way to communicate, they will express themselves with behavior (biting, scratching, hitting etc…).

You cannot make your child speak, and some children do not have the coordination to speak, but you can help them sign. Using hand over hand techniques you can teach your child to sign. If a sign is too difficult you can modify it to make it easier. By doing this, you are trying to teach the value of communication. You may wonder, “If I start my child with sign, will he only sign?” The answer is no. Your child may never be able to talk because of physical limitations but the usage of sign language does not mean they will only sign. My son is now fully verbal and we started with only sign language.

I noticed recently when trying to sign with my friend’s son (who also has autism) that he had no interest in communicating with me. I thought about it, and I did not have anything he wanted. My friend was holding M&Ms and he was furiously signing to her, trying to communicate that he wanted more candy.

At first your child may not want anything to do with you socially, it may be all functional. He or she may not run up to you and give you a hug and kiss or do the regular things a typical child does. It does not mean your child does not feel love for you. They just cannot express or communicate it.

The solution to teaching them about the value of communication is to find things they want. You will simply be a vehicle for attaining the things they want right now. Use that knowledge to facilitate communication. I would put favorite toys up where my son could not reach them and when he would see them he would scream. I would then have him sign (hand over hand) “toy”. I would then respond “Oh! You want the toy? Here you go.” And hand him the toy.

Another example of facilitating communication is using food. No, do not withhold food from your child. What I am saying is that there is probably certain food your child enjoys more than others. I purposely bought the mini-M&Ms and would give Sam 2 or 3. Well, I don’t know if you have seen the mini M&Ms but they are pretty small, and he always wanted more than 2 or 3. He would then have a functional reason to communicate with me, so I would help him sign “candy, please”. It did not take long before he knew the phrase “candy, please” in sign language. He was properly motivated.

Set up situations to help your child see the value in communicating.

You can also use PECS or picture cards. This works very well for a lot of children as a way of communicating but is limiting if you forget the card or do not have one for what they are trying to communicate. We tried using it for communication, but sign language seemed to work better for my son. We do use the PECS picture cards as a schedule when he is with therapists, and school so that he can see what will come next. It has really helped my son finish a session and give him some control knowing what will come next.

It is essential that your child has a way to communicate. Until they have a way of communicating with others, it will be very difficult to make progress. It does not matter if your child speaks, signs, uses PECS or an augmentative communication device as long as they can communicate.

Control Issues

You may think you can do it all. I have a secret- you can’t. In your new life it is more like running a factory. You cannot answer the phones, assemble the product, ship it, send out an invoice and do the sales. Your job as a parent is first, and second you are the manager/advocate for your child.

To be successful you need to assume the role as manager. Accept help. Swallow your pride and ask for help and take the help that is offered. Use state, church and community services. This does not mean you are a weak person or an incompetent parent. Think of it this way, imagine your child has a physical disability and can’t walk. If he needed several therapists and surgery, you probably would not do the surgery, and rehabilitation. You would make sure your child got the necessary treatment for a successful outcome. So it is with autism.

Your child needs some control in his or her life. Give them choices throughout each day. I try to give my child two choices, “Do you want to wear the red shirt or the green” (hold them up in front of the child so they can chose). Just because they are nonverbal does not mean that they do not have preferences. If he would not respond I would chose one and say “Oh, you want the red one huh?” and start to put on the red shirt. If he screamed or tantrumed, I would then say “Okay, you want the green one, good choice.” You can also move a clothing bar to where they can reach their shirts and let them chose what to wear.

Sometimes more than two choices is overwhelming, so try and limit it at first to just two choices but you will get more cooperation by giving them some control. Do you want to watch Elmo or Thomas the Train? (Instead of asking “which movie do you want to watch?”) This will also motivate them to communicate their preferences.

You can also do this with meal time. Do you want juice or water? Do you want ketchup or mustard? Do you want a cookie or broccoli? Do you want to go to the store or the park?

My son will often get anxious if he does not know what is happening or going to happen. I try and tell him what we are going to do, and when he could not communicate I would show him with a picture or a social story.

Social stories are great. A social story is a handmade book with simple words on each page about something that was going to happen. For example, before we took a 3 hour airplane ride to grandma’s house I would make a social story book. So he would know exactly what was going to happen. This is the airport. We walk through security first then go to the airplane gate. This is an airplane. People ride airplanes to go somewhere far away. Airplanes have a lot of people on them. On the airplane we get snacks and drinks. When the time is up, we will be at grandma’s house. This is Sam. He will ride on an airplane with Mom and Dad to get to grandma’s house. We will have fun. THE END. Sometimes I would draw pictures, cut them out of magazines, or take them with a digital camera and print them off on our computer to illustrate them.

Get Organized

It is essential that you get organized and learn to be organized with certain things. My son has all of his goals on a dry erase board in his room so that all of his therapists know what we are working on. If you do center based therapy make sure you type his goals and what you are working on and hand them to all of your child’s therapists so everyone can be on the same page.

I have a family calendar and we write what is going on for every one in the family. This lets me look ahead and see when therapies are or when my daughter has a school activity. I write down when I am going on dates with my husband, when I am going out with my friends and whatever else is going on in life so I can plan ahead.

Don’t get the wrong idea, by nature I am not an organized person. I have stacks of paid bills, and other papers that I should probably come up with a way to organize but I have not. There are many aspects of my life still not organized but the two things that are, is the family calendar, and goals for my son.

Siblings

I have two typical children and one child with autism. They are all very close in age and it was very difficult when they were younger. My other children’s success is just as important as my child who has autism. Do not emotionally neglect your other children. When my son was with a therapist, I tried to spend time with my other children. Playing a board game, break out the play doh, or color a picture with them.

My daughter who is two years older than my son would constantly ask when she would have a therapist (try explaining this to a 4 year old). I would have a babysitter come and play with just her and that was her therapy.

I also had my daughter participate with Sam’s therapy by going over flash cards with him. I told her she could be one of his therapists and she would be proud and say, “Don’t bother us mom, we are doing terrapy.” She enjoyed helping me teach him the things he needed to learn.

I also make sure to spend time with each child individually. Even if it means letting my daughter stay up late on the weekend and watch a movie with me after the other children have gone to bed. This makes her feel special and I always make it extra special by indulging in her favorite treats while watching the movie.

We see plenty of negative press about autism about the difficulty, the stress, the heartache. It does not have to be all about the negative. Seek out the positive and enjoy your children. They are not limited in their learning, we are limited by our ignorance of how to teach them.

Again, welcome to your new life, buckle your seatbelt and enjoy the ride.