Autism Denied Despite Documented Characteristics

* listed below are descriptions of some of Jessica’s speech & language, and behavior development between the ages of 2-4 yrs.

“She’s not autistic, it’s just because she’s blind.”   

That statement still gets under my skin. While I realize that some blind children will have mannerisms similar to some seen in autistic children, Jessica’s went far beyond that. Most, if not all, of those behaviors are documented by early intervention evaluations and schools, not by family.

In August, 1991, Jessica’s doctor made a note in her chart indicating that Jess appeared to be locked in her own world. Jess was 4 years old. The doctor told us it was evident that Jess has superior intelligence. We just had to find the key to unlock it.

The First Time We Heard “Autism”

Around September, 1991, Jess went for an evaluation at the a school for the blind as part of a placement assessment for school. During our tour of the school, I overheard the director of the school compare Jessica to one of their students that was autistic. At this time, our family knew very little about autism. Once we were all back inside the conference room, I mentioned that I had overheard the comment, and wondered if she felt that Jessica might be autistic. 

What happened next was the beginning of a 3 year-long process seeking a diagnosis. The director flat-out to my face firmly denied saying it. Denied saying autism, denied comparing Jess. Absolutely would not say another word about it. Hmm…The lady doth protest too much, methinks. Then she handed us a brochure about autism and said it was our right to seek an opinion on that. It was awkward. 

We read the brochure. We researched. The more we researched, the more we were convinced that Jess was autistic. Most of the characteristics listed below were documented before that visit to the school for the blind and before I ever heard the word Autism from that lady’s mouth.

COMMUNICATION ISSUES

2 years old

• Echolalia
• Large vocabulary but asks for “bear,” says, “it’s okay,” to comfort herself
• Pronoun confusion

3 years 8 months old

• Very significant difficulty responding to basic spoken questions
• Very significant difficulty maintaining a topic of conversation
• Teachers continue to model correct pronoun usage.
• Can talk well but not communicate feelings.

4 years old

Does not state name when asked, but can when asked in the form of a fill in the blank question.  “My name is ____.”

4 years 8 months old

• Significant problems with receptive and expressive language skills
• Significant problems with pronoun substitution.

6 years old

• Improvement in pronoun usage but still needs some work on this.

SOCIAL ISSUES

2 years old

• Largest deficit area was in social speech and interaction.

4 years old

• Engaged in minimal interactions with other children.
• “low socialization skills”

4 years 6 months old

• If peers approached her to talk, play, or stand too close, she would push them away, ignore, or asked to be taken outside.
• Has shown little interest in any activities going on around her in class.

4 yrs 8 months old

• Still prefers solitary play over playing with peers.

NOISE SENSITIVITY

4 years 6 months old

• Eats very little at school. Noise and/or smells in cafeteria bother her.

4 years 8 months old

• Some improvement in eating with fewer tantrums
• Tired & overstimulated by noise and movement in the kindergarten class.
• Appears quite sensitive to noise, often becomes agitated and restless as noise level increased. During noisy periods of time, she would frequently asked to be taken out of the room.

TOUCH ISSUES

2 years old

• Resisting hand over hand manipulation of toys and materials.

4 years 6 months old

• If peers stand too close, she would push them away, ignore, or asked to be taken outside.

ATTENTION PROBLEMS 

2 years old

• Cooperated well but had trouble staying on task.
• Resistance to the structure of the classroom,” specifically, sitting at table

4 years 6 months old

• Short attention span and has great difficulty staying on task.
• Very self-stimming, can become quite angry when teachers try to stop it.
• A teacher must physically hold Jess in her lap to get her to sit still for 2-3 minutes during a lesson, like music.

4 years 8 months old

• If allowed to stay off task for very long, she begins to self talk and self-stim
• Tunes out other classroom activities around her
• She must be reminded to listen to what her teachers are saying
• Attention span still quite short but has increased

In December, 1991, a Licensed Psychologist reported that Jessica “demonstrated significant qualitative impairments in reciprocal social interaction, communication, and a repertoire of activities and interests so as to warrant a diagnosis of autism.” However, somehow within this same assessment, the report said the childhood autism rating scale did not reflect significant impairments indicative of autism. Okay, that made no sense at all.

In March, 1992, we got the full report back from our Team Center Evaluation. They deemed she was not autistic, she just acted that way because of her vision impairment and developmental delay. We were crushed.

But not defeated. Our quest would continue…

Next:  Standardized Testing

==================================================================

****** Educators – This is the best information I have ever found that clearly describes the difference between Blind/non-autistic and Blind/autistic. From the Texas School for the Blind and Visually Impaired

Examples of Symptom Presentation in Blind/Autistic Children in Contrast to Blind/Non-Autistic Children a la DSM-IV Criteria* ******

===================================================================