What To Do While Waiting For An Autism Diagnosis: Early Intervention Without a Diagnosis

little autistic boy with paint on hands


There is a huge difference in speculating that your child has autism and taking the step to getting a diagnosis.

Crossing into the abyss of being labeled is pretty darn scary.

Special needs parenting isn’t for the faint of heart.

It is hard to take that first step to make an appointment looking for a diagnosis.
I know that I paced around the house several times before I made first Logan’s appointment. I negotiated with myself. Saying things along the lines of ….
Does he really need this? Maybe I am wrong. This is going to cost a fortune. Does this really matter? Does he even need a diagnosis? I negotiated with myself by saying things like oh, he is just developing slow, he will catch up. Thoughts like “if he has autism do I really want him labeled?

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Doctor

All these thoughts bounced around in my head before the first ring on the other end. I stuttered through the words trying to schedule the appointment, “I think my child has autism.”It was unnerving how hard it was to say the words out loud. I finally got an appointment. It was scheduled for 10 months later! 10 months! How quickly that can make you feel defeated?

Unfortunately, this waiting period is common for many families seeking a diagnosis. Some geographical areas are lucky and can get in to see a professional within a reasonable amount of time. Others like my family were given an unbelievable wait time and no insight on what to do.

I have discussed many times in multiple posts about the benefits of early interventions. It matters, it is important, and it makes a difference. There is plenty of research and studies out there, but still, we have this lag time of getting interventions in place.

It is amazing what can be accomplished in 10 months of interventions. Instead, there is no direction given. Simply wait until you have an appointment and see what they say.  Just wait, no other direction, no other helpful advice but to simply just wait.

Doesn’t seem logical, does it?

So, I want to tell you what I wish someone would have told me while I was waiting for our appointment. I want to point you in the right directions, I want to help your child now, instead of waiting for 10 months or longer as we did.

First, you have to trust yourself on this, follow your instinct and act. Become your child’s advocate and fighter now. I promise even if you are wrong and your child doesn’t have autism early intervention will not hurt him or her. There are plenty of helpful interventions that can be started without an autism diagnosis.

I took Logan many times to our pediatrician regarding some of his different behaviors, I was told over and over that he wasn’t delayed too much and we should wait and see if he should catch up. Wait and see tends to be a common approach from some pediatricians and honestly, it is a terrible approach. Waiting and seeing takes away intervention time, can provide false hope to parents, and downplays parental concerns. I am sure that there are many children who catch up, but to me, that’s not worth the risk of giving up early intervention time. Trust yourself, you know that voice that you have in deep down in your stomach. That is your mom gut, say hello and start listening to it.

State Early Intervention Programs

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Phone Call

Start by making another phone call, to your states early intervention program. Every state has a program that is geared toward providing early interventions to children who are delayed or with certain medical conditions.  These professionals will evaluate your child, assess what services are needed, what services would best meet his or her needs, and help set up an Individual Family Service Plan. These services can be speech, physical therapy, occupational therapy, feeding issues, and other areas of delay. These professionals help you as a parent and your child with family teaching, suggestions, services, and can be the very start of you early intervention services for your child.

I cannot thank my son’s early intervention team enough. He was assigned the most amazing special education teacher and speech-language pathologist. These women meant the world to me in a very uncertain time in my life. They listened to me without judgment, provided me with the education I needed to help my child at home, encouraged me and my child, supported us in the community with helping us go to the library and to a new preschool. They listened to me as I cried and showed me grace and love. They treated my child like he was the only child they worked with. I couldn’t have asked for more and I am truly grateful for them.

Speech Therapy Services

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Speech Therapy

What are some signs that you notice in your child? Is their speech delayed? Is it slightly off? Make an appointment with a speech-language pathologist and have them start working with your child. Believe it or not but you don’t have to have an autism diagnosis to start speech therapy. A speech-language pathologist can show you ways to incorporate speech skills as a parent to a child. I focused a lot on labeling things for Logan when he was little instead of the function and flow of language. My child’s speech-language pathologist showed me how to build speech skills through play and ways to help strengthen Logan’s language development.

Physical and Occupational Therapy Services

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Occupational Therapy

Is your child having delays or difficulty walking, running, bouncing into things? Make an appointment with a physical therapist to help assist your child with the start of gross motor skills. They will be able to show you ways that can help you help your child by strengthening the muscles needed for these skills. Is your child having issues with loud noises, certain fabrics, picking up food items with their fingers, then occupational therapy is a great place to start.  Occupational therapy is great for adaptive skills, fine motor skills, developmental skills like brushing teeth and combing hair. Occupational therapy can help a child develop the visual skills needed for reading.  They can show you ways to address areas of concern, building tolerance, and gaining new skills. In addition, teaching you as a parent how to address these concerns at home.

Behavioral Therapy

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Child Emotional

Is your child having difficulty with following directions, safety concerns like running off, hitting, and biting others then reach out to a behavior specialist? They can help provide you with the resources to help curb these behaviors, find the cause of these behaviors, and help teach coping skills and most importantly safety. I know how hard that sounds, but it works. Logan was a child that if he didn’t know you and you said hello to him or approached him, he would scream, kick, and try to bite at that person. I didn’t know how to stop these behaviors because I didn’t know why he was doing them. I wish I would have worked with a behavior specialist earlier, I feel that it would have saved me and Logan a lot of heartache and misunderstandings.

Social Interaction

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Child at Library

Is your child shy, not interested in other children? Start slowly introducing them to other children, reach out to your friends with children the same age and initiate peer exposure with some play dates. Another great option is the local library, many have story times which includes other children around the same age singing songs and reading books. This can help your child be around other child but not force interaction if they are not ready. Play is so very important when it comes to developing skills for all children.  Get down on the floor with your child and play with them, it is free, easy, and builds many skills. The benefits of play are undeniable. Line up, build, play dress up and play with whatever it is that interest your child. If your child wants to spin the wheels on the car, spin the wheels with them, talk about the car, the colors and how fast that car can go.

Act Now Don’t Wait

What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis What To Do While Waiting For An Autism Diagnosis Early Intervention Without a Diagnosis Children Playing

Still trying to decide if jumping into early intervention therapies are the right choice for your child? Early interventions are linked to optimal outcome for autistics later in life. Will implementing therapies such as speech, physical and occupational therapy, behavior interventions, and increase exposure in social experiences hurt your child?

Simply, no.

Improved communication, self-care skills, physical and social regulation, and learning socially acceptable behaviors can benefit any child whether they are diagnosed with autism or not. Most of these therapies are play-based, fun, and enjoyable for children. While every child is different and the skills they gain may be different from other children, some progress is better than no progress.

It’s hard when you first notice something is different about your child, you question everything, you seek professionals opinions, you trust their opinion even if it goes against what you are feeling. You can feel lost grasping for help, where to start and what to do.

When you finally get the courage to make the appointment to know for sure what is going on, only to be waitlisted. Don’t feel defeated, start helping your child now. Some people may be comfortable with the waiting approach, but don’t wait, act now. You never know what early interventions can do for your child’s life later on, and you don’t need an autism diagnosis to start services now.

Are you currently waiting for an autism diagnosis? What does your waitlist time look like? Be sure to comment below to let other families know that they aren’t alone.

If you haven’t yet check out some of my other post 9 Early Signs of Autism That I missed as a Mother and The Autism Diagnosis: Why I took so long to accept my son’s. 

1 thought on “What To Do While Waiting For An Autism Diagnosis: Early Intervention Without a Diagnosis”

Leave a Comment