Dos and Don'ts After an Autism Diagnosis

My kids (left to right): Tate, Titus, Emily, Isaac, Sydney (above), Regan, Levi, Bailey

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.  

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Tate at Preschool

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.    

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other. 

Tate's poor motor skills and refusal of foods
often meant someone needed to help him.
Older siblings were always willing to help.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

If you liked this post you might also one of these: It's Not Such a Bad Life or: 15 Truths of Parenting Special Kids or: There is No One to Blame.

There is no one to blame, myself included.

In my blog post “15 Truths of Parenting a Special Needs Child” I touched on a topic I have been meaning to expand on for a while. It was Truth number twelve: “Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.” Mostly we don’t because we are too busy!

Tate and Sydney, Dec. 2014

My daughter’s disability was a direct result of her birth mother’s poor choices. Fetal Alcohol Syndrome is a disability a child is born with that is completely avoidable and caused by a pregnant mother’s alcohol consumption. There is a direct cause and we know what it is! Parents of children with autism do not have that. We do not KNOW and it is maddening sometimes. We have these little nagging doubts once in a while. Like: What if, someday it is discovered, taking ibuprofen while you are pregnant causes autism? I did that. I took ibuprofen sometimes. What if, research in the future tells us living near high voltage lines is the cause of autism? We built our home very near power lines. What if eating fish while you are pregnant is what causes babies to be born with autism? I ate an occasional tuna sandwich during those nine months. What if I did this to him? Most of the time those little nagging doubts are silent but once in a while they whisper to me.

I have read the newer research suggesting autism is genetic and begins in the womb and I believe it is an accurate premise. However, I live with one foot in the autism community where somewhere between 25% and 50% of parents believe immunizations are to blame. So, I hear it. A lot. And, although I know there is really no research to back it up and I do not believe immunizations are to blame…. What if? I know Tate was “quirky” from infancy, but he did regress at age two and sometimes, once in a while, this little tiny droplet of dissonance creeps in and whispers to me, “Maybe they are right. Maybe YOU did this terrible thing to your child. You may have saved him from polio, measles, mumps, rubella, and many other diseases but you caused him brain damage.” And then, the voice of reason drowns out the whisper and I know that there is no one to blame, myself included. 

We’ve come a long way since “the refrigerator mom” theory. Some of you might be young enough that you have never heard of this theory. A man named Leo Kanner wrote a paper in 1943 that blamed a child’s autism on their parents. He believed that a parent’s lack of love and attention (warmth) for their children caused autism in their children. Bruno Bettleheim jumped on board with Kanner and wrote articles in the fifties and sixties echoing the same theory. Bettleheim compared the parents of children with autism to guards in a prison camp and their homes to concentration camps. I have never for a minute believed poor parenting caused my child to have autism. Never for a minute. But, I am just the tiniest bit defensive about this because I am not sure everyone else in society understands that. You cannot love the autism out of someone! And by the way, you cannot spank it out of someone either.

Back when I first learned what autism is and before I had done much reading or research, I did worry and wonder a lot more often if I had contributed to Tate’s developmental delays. Had I given him enough attention? Maybe if I’d read to him a little more or taken his bottle away a little earlier. Maybe if we’d watched a little less television. Tate’s favorite show at age two was The Teletubbies. At one point I actually worried that too much Tinky-Winky, Po, Laa-Laa, and Dipsy had caused Tate’s autism. 

The tiny dropper full of occasional doubts and guilt I have over the cause of autism is usually silenced by reason fairly quickly. But there are others that badger me sometimes-- Things that are directly related to Tate’s autism. I think about the things autism stole from the other kids. Those three years of early intervention we did with Tate made me absent in my other kids’ lives for much of that time. I was here but I was not focused on much of anything besides helping Tate. They all understand how important the early intervention was. They all understand I would have done the same for any one of them. They never complained. They never rebelled. They were all helpful and supportive. I gave seventy or eighty percent of myself to Tate during that time and the other six kids shared what was left. This voice does not whisper as quietly as the other and does not listen to reason as well. Sometimes it talks in an outdoor voice and I have to get very stern with it. I reason, “What else could I have done? I am only one person. My baby needed me to help him. The kids understand. They are all turning out fine!” Then the nagging doubts and the guilt are quiet. For a while.