What To Do While Waiting for
an Autism Diagnosis
I don’t know you and you don’t know me, but chances are if you are reading this post you suspect your child has autism. It was not too long ago that I was in the waiting place, too. The waiting place is a dry and dusty desert. It seems that there is not much to do there but – wait. Wait for help to arrive. Wait for someone to save you. Wait for someone to tell you how you got there. Wait for some escape. The waiting place was one of the hardest places I’ve ever lived.
You see, my son was different. He was not like the other kids at church. He wasn’t like the kids in his pre-school. He had fallen behind on many milestones. What little words he had spoken he began to lose. He didn’t crawl on-time. He didn’t walk on-time. He couldn’t spell his name. He couldn’t say his ABCs. He couldn’t hold a sippy cup. He couldn’t use a potty. He couldn’t say “Mama”. He couldn’t read a book. He couldn’t sit still. He couldn’t. He couldn’t. At one point it seemed that the list of what he could do was greatly outweighed by what he couldn’t do.
Time and time again we spoke with our pediatrician. We quietly asked about milestones. He was always behind – but at first, not behind enough. He was a boy, we were told. Boys were always slow. We were told he would catch up. Soon, I asked about autism. I was told emphatically that it couldn’t be. He smiled at us. He could smile so he couldn’t have autism. We made our way through a battery of tests. We were still waiting.
So the years went on and so did we. Waiting. Waiting for help to come. Waiting for an answer. Waiting for a diagnosis. Little by little we were losing our son. We were lost, too. No one to turn to. No one who understood. It’s hard not to feel the weight of blame on your shoulders as a mom. I think it is something we moms do well. Blame ourselves. Was it something that happened during my pregnancy? Was it the flu shot I took? Was it a shot he had? Was it the antibiotic they gave me in my 3rd trimester for a respiratory infection? Was it his birth? It was a rough birth. Maybe it was because he was a forceps delivery. Maybe I just wasn’t a good enough mother. Maybe I didn’t teach my son enough when he was a toddler. Was my diet bad? Was his? How did we fail him? Words were gone. He battled through learning to walk, finally taking his first steps. Losing his ability to eat certain foods without gagging. His once healthy appetite dwindling down to only a few solitary foods that he would endure. His eyes suddenly different – empty laughter. Flapping hands – noises. Lots of noises. The waiting was hard. With no autism diagnosis, the stares of strangers take a toll on you. The questions from friends. Who do you turn to? Being a mom is hard. Being a mom with a child with autism is even harder. Having no diagnosis is the hardest.
You are in the worst of it. Right now. If you are reading this and you don’t have help – you don’t have a diagnosis – you don’t have what you need to move forward. You are in the worst but there is hope.
The problem with the waiting place is that most parenting books won’t help. What the mom down the street does won’t help. What you do for your other kids won’t help. All the advice in the world might fall on you hard but you might not be sure what is right for your child. You are in a completely unique place in your parenting journey. That is partly because autism in all its spectrum-esque glory is like a chameleon. Each child is slightly different with it. Because of autism there are a lot of kids who are “higher functioning” than mine. They may act similar in some ways. They might be completely different in others. They might not be like him at all. There are children who are lower functioning than my son. It is a spectrum. It is hard to know how to handle this when you are in the thick of it. I wasn’t sure where my son fell on the spectrum until after he was formally diagnosed.
Here are the steps in moving forward even in the waiting for an autism diagnosis:
Find a local support group. You first need to find a support group that is for parents of children with autism. You need to go to this support group. Make yourself – even if it is hard. It is difficult when you don’t know if you belong. Go anyway.
Look to early intervention if your child is young enough. In most states the cut off age is 3 years old. I didn’t learn of this service until my son was nearing his 3rd birthday. My pediatrician did not tell us about E.I. I wish they had because this is a wonderful resource. They can do evaluations and get you connected with a speech, occupational, and physical therapist depending on your child’s needs. There is new research that early intervention begun between 18-30 months helps improve an autistic child’s abilities.
Find a developmental pediatrician or pediatric neurologist if you are not getting any help from your pediatrician. Maybe, better yet find another pediatrician, too.
Look for someone you can talk to. Share what you and your family are going through. This may be a counselor – this may be a close friend. It might be your mom. Find someone you can be honest with. This might make the burden you are carrying just a little bit lighter.
Give yourself a small break. It may be hard to find respite. It may be difficult to find a babysitter. Find a way to take a small break everyday. You are a mom with needs, too. Many times without a diagnosis, moms are the constant caretakers with no one to give them a break. I remember full days of chasing behaviors and sleepless nights, too. Be kind to yourself and even if it isn’t an actual day out (at first) find a way to get some alone time or time with other moms. The isolation of managing behaviors alone all the time can weigh heavily on parents. It is important to find ways to not lose yourself in the process.
If your child attends public preschool, fight for ABA therapy. “Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.” More information can be found on the Autism Speaks website. This might be the one tool that has made the biggest difference in our family life and in our son’s social and behavioral skills.
I want to leave you with a word of encouragement. There is hope. My son had a late diagnosis at age 6 1/2. Because of this he didn’t get all the therapy he needed at a very young age. He needed speech, OT and PT along with extensive ABA. He is doing well, today. I’m very pleased with his accomplishments over the past 6 years.
I felt like we would never have an answer. Even with an autism diagnosis, we still don’t know why. At least now we know what. We can take small baby step to finding solutions for problems everyday that arise in the sphere of autism. The waiting place is lonely and desolate but you will come out on the other side equipped as a warrior who is ready to keep fighting for your child.
Are you waiting for an autism diagnosis? Leave a comment and share your story.