Navigating the Autism Diagnosis Journey: Essential Tips for Supporting New Parents

How can parents of children with autism be a resource for other parents?

Every year, more and more children and their families receive a diagnosis of autism. While most parents are relieved to finally have a “name” for what is going on with their child, many parents are frustrated at the length of time it took to receive the diagnosis.

So, as a parent with a child who has autism, you can be a resource for other parents as they begin to navigate this journey. Your advice and expertise on how to shorten this journey for a new family is critical to their child getting assistance as soon as possible. Here are ten “10” simple tips for assisting parents in obtaining the necessary diagnosis their child requires.

Early Intervention

Despite the frustration that many parents experience through their journey of obtaining a diagnosis, it reminds them of the overall benefit they will enjoy later. Stress the importance of “early intervention.” The quicker a child with autism is diagnosed, the sooner they can begin receiving the services they may need to be successful in life.

Such services could include:

• Speech and language therapy
• Applied Behavioral Analysis supports
• Occupational Therapy
• Sensory Supports, as well as various supports and interventions in the classroom at school if they are school-age ready

Many parents beginning this journey may feel frustrated and alone. It becomes easy for them to just give up and stop the overall progress they may be making after receiving that overall diagnosis. Encourage them to persist in their efforts to continue with the process. Many times, while parents are seeking a diagnosis for autism, experts in the field may discover an additional disability that can also be addressed.

Parental Denial

Some parents have been told by others that their child may have autism. This is especially difficult for parents who are dealing with their first child. Everyone wants to believe that their first child is “perfect.”

New parents may not be noticing the differences that their baby is demonstrating because they have no other children in the home with whom to compare the child. They may also be unaware of the unique characteristics that their child is demonstrating.

Let these parents know that there are services out there that could support their child. Getting the initial diagnosis of autism can certainly open doors for the family to receive such help for their child.

Remember that denial of a disability is often common for parents. Listen to these parents carefully, and assure them of the benefits that they can receive as a result of interacting with the right professionals who can assist them with their child.

Preconceived Views

Many parents will assume that their child does not have autism because their child is meeting their developmental milestones. While many children with autism may not be meeting their developmental milestones, others may be fine.

There are many different forms of autism. All children with autism are not necessarily behind in their developmental milestones or their academic abilities. In fact, you can have autism and also test as academically gifted.

Talk openly and honestly with these parents. Share your own experiences with obtaining your child’s diagnosis. There are still many people out there who believe that all children with autism are non-verbal and basically sit on the floor spinning plates.

As a parent of a child with autism, you can become a valuable resource to these families. You may even want to consider introducing a new family to your child with autism. Some new parents find it comforting to meet an autistic child from another family.

Expect Delays

Many parents attempting to get a proper diagnosis for their child are often overwhelmed and frustrated with how long the process takes. Let the parents know to expect delays.

Many times, when starting the process of obtaining a diagnosis, you need to get your child on a wait-list with a doctor who specializes in the diagnosis and treatment of autism. Sometimes this wait-list can take up to 18 months before the child can be seen for their evaluation. Knowing this ahead of time may help reduce the surprise and frustration that parents feel when they attempt to get their child into a facility for an evaluation.

I wish the diagnosis of autism were as simple as completing a blood test. That would certainly make life easier for everyone involved.

However, that is not the case. Even siblings diagnosed with autism may present with 100% different symptoms.

Girls Can’t Have Autism

All children with autism may present with very different symptoms. Traditionally, girls with autism end up being diagnosed later than boys. There are still some people in the community who believe that only boys can be diagnosed with autism.

Parents of girls exhibiting signs of autism may be extremely frustrated with the entire medical community. Assure them that despite the hardships, the end results will provide great benefits to their daughter.

School is Not an Issue

Some parents with autistic children will not seek out a diagnosis because the child is doing well academically. Remind them that not all children with autism struggle with academics. In fact, some children with autism excel academically at school.

The parent also needs to consider issues such as their social skills, sensory-seeking issues, responses to loud and unexpected noises at school, changes in their daily routines, etc. Many times, once these issues also begin to be addressed with parents, they begin to realize that maybe these autism-related issues need to be investigated more.

They’ll Outgrow It

Some parents feel that their child is just “shy” or will develop their social skills later in life. There are still some parents who believe that their children will outgrow their autism. In a respectful fashion, you need to remind these parents that, while a diagnosis of autism can be stressful, autism is not something that anyone outgrows.

It is a lifetime condition. Having the correct diagnosis can open doors to services for their child while they are young and attending school, as well as when they transition to adulthood or post-secondary situations.

Dealing with Doctors

You can be a valuable resource to families just beginning their journey to achieving a proper diagnosis. Not every doctor in the community has a full understanding of autism. You can save a family a lot of time and stress by assisting them with the location of a doctor or facility that has the proper training in diagnosing autism.

Some local doctors are worried about an over-diagnosis of autism and may stall the overall diagnostic process. While no one wants their child to receive an incorrect diagnosis of autism, parents also don’t want to lose time with an overly cautious doctor.

Parental Guilt

Many parents of children with disabilities deal with “Parental Guilt.” They often wonder if they caused the child’s disability. Was there something they could have done to prevent it?

Some families are embarrassed by the behaviors or inappropriate language used by children with autism, so they tend to not seek assistance. They feel that they will be branded as “bad parents” or the cause of their child’s behavior or language.

Assure them that these are issues that can be effectively dealt with once their child receives their diagnosis. Ignoring the symptoms associated with your child’s autism and not providing effective interventions could cause the behaviors and inappropriate language to heighten. Share your journey as you progressed with your own child.

What Will the School Think?

Most children with various forms of autism attend their neighborhood school with their non-disabled peers. Some students with autism require specialized classes and an Individualized Education Plan (I.E.P.) from the Special Education Department at their school.

They may require specialized services from a special education teacher, speech and language pathologist, occupational therapist, physical therapist, adaptive physical education specialist, etc. They may require an array of accommodations and modifications throughout their school day to be successful.

Other students may need the support they can obtain from being placed on a 504 plan at their school. Then there are also students who require neither. Once your child receives a full and appropriate diagnosis, they can begin the process of receiving appropriate services at their school to be successful daily.

Attempt to be the resource you wish you had access to when you began this journey with your own child with autism for another family.