Look beyond Labels!

She has Autism.

She is Autistic.

She is on the Autism Spectrum.

She has PDD-NOS, you know Pervasive Development Disorder Not Otherwise Specified. Ummm, it’s like high-functioning Autism. Yes it’s a milder form of Autism.

These are some of the ways I try to explain my daughter’s diagnosis to anyone who asks ‘what issue(s) does your daughter have?’. Upon hearing this some people try to act concerned, some random people show pity, but most of the therapists and moms affected by Autism say ‘But she doesn’t look that Autistic!’.

Autism, PDDNOS, ASD are but just labels. Just as we all have labels in the form of names to distinguish one from the other, we have labels in the form of caste, creed, nationality, professions etc, specific types of behaviours are grouped together and given a label so as to help the therapists set the course of therapies for a given child. They mean nothing more than that. They also help parents to explain their child’s condition in a single word.

Many new parents get concerned when their child is first diagnosed as being mild, moderate or severely autistic. Their world come crashing down and they feel helpless, vulnerable and crushed. So here’s what I have to say to all those parents.

At 3.5 yrs of age my daughter was diagnosed with PDDNOS. She had certain behavior issues, no speech, very poor motor skills. We did extensive therapies and she progressed slowly and gradually. We are not quite there yet but along the way I have seen pretty much all shades of Autism and what I know is that my daughter has great potential, she is an avid learner given all her peculiarities. I keep on hearing from others things like, ‘She’s better than before’ , ‘She’s not like typical ASD kids’, etc. But ASD is a label attached to her. Recently I got her re-evaluated and the psychologist who assessed her very gravely told me that my daughter has now progressed from mild autism to ‘moderate to severe range’. I listened to her as she attempted to console me and reason with me. I just listened to her and came out of her office. I have been in this field long enough to not be bothered by any diagnosis. Anyway I took the reassessment results to the present speech and behavior therapists and both of them asked me one thing,

Do you believe in this result?’

And my answer was simple,

‘No way!!’

These assessments are heavily based on the parent’s ability to correctly answer questions related to the child’s day to day behaviour, which in most cases is biased. Secondly these assesstments test a child’s IQ, his academic skills, his behavior at the time of assessment, while not taking into consideration that the child in question might not have had a sound sleep the past night, he might have had eating disorders due to which he had to be taken for assesstment empty tummy, he might have become restless due to the commute, the overall waiting time. So by the time a child enters the assessment room he might by groggy, moody, sleepy, hungry, agitated, and anything in between. He might not behave the way he normally does, he might not answer even to those questions and concepts his mom spent countless hours teaching. And there might be some questions and concepts for which the child wasn’t prepared, was never taught; that doesn’t mean the child lacks learning abilities.

For example, my daughter was asked to read a sequence of 4 numbers, then write it down from memory.

She was asked if the sky is blue, then the grass is_______?

She was asked to repeat a very long sentence after hearing it.

She messed up in these areas only because I had never taught her sequences and correlations. And she already has speech difficulties and can hardly string 4 or 5 words to form a sentence. Anyhow such sort of questions became the basis for her ‘moderate to severe diagnosis’. It took me only a couple of lessons and my daughter could answer most of the questions on her own.

I asked her

‘the sky is blue and the grass is ___?’ She promptly replied ‘green’

‘The sun is yellow, the moon is ___?’

‘White’, She replied on her own .

I asked her , ‘ If Yusra(herself) is a girl, then Mustafa (her lil bro) is a ____?

‘Pig’, she replied.

I burst out laughing at her apt response cause her lil bro annoys her alot. ( That was only a one time reply, otherwise she knows that Mustafa is a boy )

You see my point! These assessment results are heavily skewed and biased. Dont spend your precious time trying to find an appropriate accurate diagnosis for your child, instead focus on his/her weaknesses and work together to overcome those weaknesses through extensive therapies. Get an IEP (Individualized Educational Plan) made and follow it. Let your child define the course of learning.

Until next time,

Adios

~Sana~

One comment

  1. Sana loved ur post!! i am rakhshis eldest sis and my speciality is neurology with developmental pediatrics. i work with such kids and as i said i find fault with a lot of labels!! this is not a one point in time thing at all

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