Searching for an Autism Diagnosis

autism - always unique totally intelligent sometimes mysterious

As a parent, seeking out an Autism diagnosis isn’t on your to-do list. A​n Autism diagnosis is a difficult thing to both receive and search out. Families search out Autism diagnosis’ for a variety reasons and some have it thrust on them. Neither situation is easy. Seeking the diagnosis is often a difficult decision. Some reasons families seek a diagnosis are:

  • T​o get financial resources for support of the autistic individual
  • Receive services in the schools
  • Increased understanding of the individual and their world
  • Qualify for medical or psychological services

Our Autism Diagnosis Situation

Every parent finds themselves in a different situation with their child. Some children with Autism are non-verbal with severe behavioral issues. Other children show less severe symptoms. In our case, it began complexly. At 3 his verbal skills were limited due to a hearing impairment. With that resolved, he began speech therapy in a special early-on classroom. I thought the problem was resolved.

Instead, this uncovered more issues. His vision was severely impaired. Unlike me, he was far-sighted. His ophthalmologist prescribed glasses at once, but they were not the correct strength. To give his eyes a chance to adjust, his glasses were stepped up over the course of 3 years.

S​till, I noticed issues. Among them are:

  • A​ll play scripted and a replay word for word of real life situations
  • Lack of interaction with peers
  • Repetitive stories
  • Inappropriate information sharing with strangers
  • Lack of age-appropriate interests

I knew these would make interactions as he became older more difficult. I worried about his ability to make and keep friends. The implications of weak social skills as he moved from elementary to middle school also cause concern. I knew I needed to find something to help him out sooner rather than later.

Searching for Resources

With my concerns weighing heavily on me, I began researching. I devoured articles, books, audible books, and talked with friends about what was going on. In the end, a credible source informed me that ABA therapy would help him with these behaviors and aid in teaching him how to interact with others. Researching ABA, I discovered availability was limited to those with an Autism diagnosis.

I didn’t know much about Autism, but I did know my child didn’t fit the stereotype you see on television. He had varied interests, desired human connection, wanted to be noticed, and desired to be a part of every interaction.

Obtaining an Autism Evaluation

I thought getting an evaluation would be simple. Yet, this took over two years to carry out. As a consultant, my insurance often changed per employer, so I bounced from waiting list to waiting list. Each insurance’s rule changed what center I could use for the evaluation and the center’s all had waiting lists. After 2 years and another center putting us on a waiting list, I lost it. Thinking back, I’m certain there were tears involved with my lengthy explanation of the last two years of waiting. The receptionist moved us up the list and his evaluation was scheduled within the month.

T​he Evaluation Experience

T​he Autism evaluation is an intense experience. It lasted hours and involved 3 or 4 different specialists. On evaluation day, Marcus was on point. He entered ready to listen. There was limited repetition and one of the best days he’d had. I was certain they wouldn’t diagnose him. I even second guessed myself by the time the day was over.

A​t the end of the day there was a meeting between myself and the panel of specialists. The findings surprised me based on the day we experienced. He did have autism. They reviewed the major factors in the diagnosis and recommended a course of treatment. He qualified for:

  • Physical Therapy
  • Occupational Therapy
  • Speech Therapy
  • A​BA Therapy

Seeking Therapy

Most of the needs they listed were already met by the school. He was receiving these services, except for ABA. The one therapy I needed most and the reason I scheduled the Autism testing. My willingness to engage in the other therapies hinged on a center offering ABA to him. If I thought obtaining an evaluation was difficult, I was about to learn a whole new lesson in this adventure.

T​he recommendation for ABA included 20 hours of therapy per week. He already has one hour of dance after school and I share custody with his father, which further limits available time. Locations of ABA centers often included drives of 30 miles one-way, which also cut into the hours available not to mention financial resources. How does someone work full time and manage the extra hours?

Finding a Local Center

I found a local center offering ABA therapy, but they also wanted to evaluate his PT, OT, and speech needs. I agreed to the evaluations while the center obtained insurance approval for the ABA evaluation. The center was aware these were secondary concerns and my focus was ABA. When the paperwork cleared for the ABA evaluation, it could be months before a therapist would be available, and they didn’t want to do the evaluation until the schedule opened up.

T​o make matters worse, the center was unable to offer the full amount of time slots for the other hours of therapy. It turned into an expensive since I ended up pulling him from the center entirely. I wasted 3 months on evaluations for speech, PT, and OT to find out they were unable to offer the service that was most important to me. It wouldn’t have been as bad, but they knew the service I desired most was ABA.

Revisiting the Search

3 months in, I was starting the process over. After hours of internet searches and calling around everyone pointed back to the place I’d left. I encountered another center 10 minutes away and one that comes to your home. Having learned my lesson the first time, I contacted both companies. After 6 months of searching for an ABA provider, Centria was at my house evaluating my son.  A couple of months later, treatment began.

Why I Searched for an Autism Diagnosis

I​t’s been over a year since ABA services began and I’m increasingly more satisfied as time goes on. Initially, I searched for a diagnosis because I was worried about my son and his social skills. This year (3rd grade) the lack of social awareness became obvious, but he was already receiving aid so minor adjustments to his programs were simple.

S​kills that serve him well academically such as perseverance have proven a significant weakness when dealing with peers. For example, his relentless pursuit of a girl in his class has caused significant issues at school. With ABA already in progress we’ve already implemented a program to help him learn socially correct ways to deal with his feelings.

T​he diagnosis wasn’t for me, it wasn’t for extra school aid, but instead for his future. He’s a smart boy and will be successful in his life. Having the right help ensures him the skills he’ll need later on in life to deal with social situations he encounters. In ABA, he’ll learn ways to approach girls, coworkers, and peers. He’ll learn conflict resolution and ways to leverage his strengths. Above all, he gains confidence and learns the nuances of society that come easy to others.

 

 

 

For more information on Autism evaluations visit Psych Central.