When our daughter was two years old, we began to think something was not quite right. We noticed odd behaviors and a lack of communication that our nieces and nephews had not exhibited when they were her age. Our concerns were growing day by day.
Family members, however, trying to help would encourage us by saying that every child is different and develops at their own pace. We were often told that it was just a phase and that she would eventually grow out of the tantrums, fears, sensory issues, and lack of expressive and receptive language by three years old. She did not.
A good friend, eventually, who had a son on the Autism Spectrum, told me that she noticed similarities between her son and our daughter. I remember hearing her comment and thinking how wrong she was; our daughter could not have autism.
Even though my friend was a fantastic mother, I had witnessed her struggles with her son, and my daughter’s behaviors seemed different. Her son was non-verbal, yet our daughter, although limited, was verbal. Nevertheless, the seed had been planted: did my daughter have autism?
Table of Contents
- Primary Care Physician Evaluation
- School District – Early Intervention Program Evaluation
- Child Development Specialist Evaluation
- Pediatric Neurology Evaluation
- Psychological Evaluation
- Audiological Evaluation
- Follow-up Psychological Evaluation
- School District – Pre-K-4th Evaluation
- What Happened After All the Experts’ Evaluations?
Primary Care Physician Evaluation
As time passed, we observed our daughter’s behaviors. When we went for her annual check-up with her Primary Care Physician (PCP), we brought up our observations.
At that point, the doctor turned towards us and asked what words my daughter used to communicate. She started writing them down as I spoke.
After a very short time, I could not think of any other words. She looked at me, perplexed, and said, “She surely is using more words than what you have given me, right?” I felt like I was failing a test.
I scrambled as I thought of more words to add. Nothing. I could not come up with any other words. At that moment, I saw the worried look on the doctor’s face, and her smile turned into a concerned look.
She asked us to go home and keep a log of all the words our daughter was using. We did. The list did not grow.
We returned a few weeks later with our list. Our daughter had not fallen within the range of words expected for her age; CLICK HERE to learn more about other signs that are sometimes overlooked. At that point, the doctor suggested that we take our daughter to a Child Development Specialist and have her evaluated by the Early Intervention Program, which was part of our school district.
Our hearts dropped, and confusion set in. I tried to reassure myself that our daughter was verbal, although very limited in her words. She would sing and look at herself in a mirror, acting out the part of the princess in the song. How could something be wrong?
Then, the reminders flushed my brain: the gazing off into the distance, lack of eye contact, no response when being called, tantrums, fears, and sensory issues. Could something be wrong?
School District – Early Intervention Program Evaluation
The waiting had just begun. The Child Development Specialist could not see her for another four months; therefore, we made an appointment with the Early Intervention Program through our School District.
Two months later, we were in a building with our daughter, packed lunches for all of us since the testing would take hours, and fears crawled through our bodies. I can tell you that God directed our steps that day because we could not have done it alone.
A friendly team of specialists greeted us and quickly explained the testing process. They told us that once they were done, we would have test results and that each specialist would explain them to us.
Even though we were terrified, we were happy to know that at the end of the day, we would know where our daughter stood developmentally, according to these specialists. We had begun the journey into autism, and we did not even know it!
After completing multiple forms and hours of evaluation, the results were in. Her language assessment showed moderate to severe receptive and expressive language delays. She scored at 10 months in Receptive Language and 19 months in Expressive Language, even though she was now 26 months old.
In addition, the following recommendations and referrals were made: Audiological Evaluation, Neurological Evaluation, Occupational Therapy to address sensory integration, and Speech and Language Therapy to address language concerns.
Referral to our local education agency for eligible services until the age of 36 months, as part of the Early Intervention Program, was also recommended. After 36 months, our daughter would be transitioned to the public school system for continuation of services.
As a result, more appointments needed to be made, and we were well on the journey into autism.
Child Development Specialist Evaluation
After two additional months of waiting, we finally made it to the Child Development Specialist appointment. Our daughter was now 28 months old. Who knew that Child Development Specialists were so popular? Until now, I did not even know there was such a field. We had so much to learn!
The doctor had us complete endless documents detailing her developmental history from birth to the present.
After evaluating our daughter, she concluded that our daughter had a speech and language disorder and that the next six months would show whether her language disorder was developmental or neurological in nature.
She recommended continuing with Speech and Language Therapy and Occupational Therapy to address sensory integration.
So, we were on to the next appointment-making adventure. The waiting began again!
Pediatric Neurology Evaluation
Subsequently, at almost three years old, we saw a Pediatric Neurologist. After what seemed like a brief evaluation, compared to the rest, he noted emotional rigidity and restrictive repertoire in our daughter.
Based on his observations and evaluation, he diagnosed her with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). Per the National Institutes of Health (NIH), PDD-NOS was defined at the time of our daughter’s diagnosis as “. . . a threshold of Autism disorder.” Later, that terminology was eliminated and became part of the Autism Spectrum Disorders category.
In addition, the Pediatric Neurologist recommended continuing Speech and Occupational Therapy. According to him, our daughter now needed to be seen by a Clinical Psychologist to confirm the diagnosis.
The Neurologist felt that we had a developmental window to apply interventions to maximize our daughter’s potential. He told us time would tell as she developed in the next few years.
We left the office emotionally destroyed! What did all this mean? What would her future be like? We left with more questions than answers.
Psychological Evaluation
Our daughter was now three years old. We went to the hospital medical building, where a kind psychologist greeted us and tried to engage our daughter in the hope of making her comfortable.
He could tell she was overwhelmed by all the sounds, sirens, and speakers going off in the building. The psychologist tried his best to calm her down so he could begin his observations and evaluation.
After a bit, she settled down, and he proceeded. He was so kind and gentle with her; we were so grateful! Eventually, the evaluation ended, and he told us to return for the results, in two weeks.
Two weeks later, we returned. The psychological evaluation revealed immature and repetitive language, nonverbal communication was rushed and not entirely age-appropriate, difficulties with transitions, and excessive anxiety.
In addition, the Psychologist concurred with the Neurologist on the diagnosis; our daughter was again diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) based on our daughter’s impaired social adjustment, excessive compulsion, and abnormal sensory responses.
He recommended a preschool placement focusing on social development and daily living skills. At home, he recommended a regular daily schedule to encourage consistency in behavior/performance, a gradual change in routine or demands to minimize the risk of tantrums, and the continuation of Speech and Occupational Therapy.
Audiological Evaluation
In the meantime, we needed to proceed to the next recommendation, an audiological evaluation. Our daughter was severely sensitive to unexpected sounds and yet would act like she could not hear us when we called her name.
After a thorough evaluation, our daughter’s hearing results were found to be normal, thank God!
Follow-up Psychological Evaluation
Our daughter, who was now four years old, was still exhibiting great fear and aversion to sounds. She would cover her ears when she heard a loud sound or saw a public announcement speaker. We, therefore, scheduled a follow-up psychological evaluation.
The current evaluation revealed that our daughter was displaying abnormal sensory responses, compulsive manner in food selectivity, aversion to wet/sticky material on her body, anxiety with routine changes, slow at responding to facial expressions, and her speech continued to be repetitive. Learn more about her texture sensitivities and defensiveness HERE.
As a result, the Psychologist concluded that our daughter was now diagnosed with Autism Disorder or, as it is now known, Autism Spectrum Disorder (ASD). Click HERE to learn more about it from CARD, the Center for Autism and Related Disabilities, an excellent collaborative program of the University of Miami and Nova Southeastern University that aims to optimize the potential of people with autism and related disabilities.
School District – Pre-K-4th Evaluation
Our daughter was now four years old and in Pre-K. Her teacher and the Speech/Language Pathologist evaluated her behaviors as part of the Observation of Pre-Kindergarten Student Behaviors (OPSB) evaluation. They found that our daughter was socially withdrawn, preferred solitary activities, avoided interactions with other children, seemed nervous and jumpy, used the bathroom excessively (we later realized she was using it as a quiet escape), did not complete tasks, and had a short attention span.
Additionally, notes provided by her teacher indicated that our daughter covered her ears and eyes at times and feared fire alarms, school bells, and loudspeakers. She was also observed communicating using repetitive phrases. On a positive note, our daughter knew how to read and knew all her letters and numbers, which meant she could function academically, given the appropriate resources.
It was also reported that our daughter’s coping mechanism of covering her ears when there were loud sounds was interfering with her ability to participate in class activities.
In addition, these behaviors contributed to our daughter’s inability to gain the knowledge necessary to perform in the manner expected in the classroom setting.
The Speech/Language Pathologist observed, during the morning’s circle time, that our daughter sat quietly with her hands in the pockets of a beanbag pillow wrapped around her waist. This beanbag pillow had been explicitly designed to keep her hands away from her ears.
The teacher paired all the students in preparation for a song. Our daughter’s partner turned to her and started interacting with her. Our daughter, however, was unresponsive to the student; learn more about her lack of eye contact HERE. She looked at her with a blank expression on her face. When the music began playing, our daughter participated in the singing and movements; however, she would turn away from her partner.
In other words, she would follow along with the movements independently, not interacting reciprocally with her partner. She would sometimes stop participating in the song and place her hands in the beanbag pillow.
Eventually, the teacher transitioned to a phonics lesson using a large, laminated poster board. Our daughter would look away from the activity and appeared to be daydreaming.
She was found to grimace and blink repeatedly. The teacher reported that our daughter did not like this task and consistently looked away. The Speech/Language Pathologist believed that due to her hypersensitivity, the glare from the laminated poster may have interfered with her ability to attend to the task.
When the Speech/Language Pathologist examined her one-on-one, she was found to be welcoming to those who approached her, although upon initial introductions, she appeared somewhat indifferent. Her eye contact was described as inconsistent or fleeting and regulated by her.
Inconsistencies also marked her attention. For example, she tended to isolate but responded when called or brought back to task. She was cooperative throughout the time with the examiner. It was apparent, however, that she required frequent verbal redirections and prompts to keep her oriented to the task at hand.
Our daughter’s interactions were often responses to others’ initiation. The Therapist observed echolalia, meaningless repetitions of words just spoken by another person.
Our daughter’s voice was determined to be very low and quiet. Her language was a mixture of meaningful words and phrases with gibberish/jargon.
The Therapist noticed our daughter’s purposeful responses. On various occasions, she self-corrected her mistakes, thus indicating the presence of problem-solving skills. She also completed all presented activities and demonstrated good motivation and persistence when challenged.
After months of discussion with the district, IEP (Individualized Education Plan) meetings, psychologists, speech therapists, occupational therapists, physical therapists, autism specialists, teachers, and administrators, it was determined that my daughter would be best served in a general education class with support from a paraprofessional who could assist with her sensory issues. This marked the beginning of our daughter’s educational path and our journey as concerned parents.
If you want to learn more about autism screenings, CLICK HERE to visit the Autism Research Institute.
What Happened After All the Experts’ Evaluations?
After each evaluation, we did our best to address the concerns noted. We worked with speech and occupational therapists, psychologists, teachers, and specialized programs. We did anything and everything that would allow us to move her closer to her full potential.
In addition, at home, we researched, read, and applied concepts learned to help our daughter improve. We also prayed constantly and asked our good Lord to guide us through this process. We had no idea what we were embarking on, but we were confident that with God’s help, our daughter would reach her full potential.
At twenty-two years old, our daughter has made significant improvements. We still face many challenges, but she surprises us daily with her continued progress. Therefore, I hope you find hope in our journey because God can move mountains. Trust me!
In conclusion, our daughter has grown up as a caring, loving young lady who enjoys life and is happy. What more do we want for our children?
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