Highly Functioning Autism; The Struggle for Support is Real

kelrice81@gmail.comearly intervention, educationLeave a Comment

The challenge of receiving social and emotional support in an academic setting

I debated writing on the topic, solely because I feel guilty regarding our situation as problematic in comparison to other families who have children with more complex special needs and disabilities. But I also remember where my son was nearly two years ago, in a state of social disengagement and multiple development delays. Numerous providers have continuously stated their amazement at how much progress my son has made over the past few years. As a mother who spends 24/7 with him, I tend to get lost in the micro of everyday life instead of being able to reflect on the macro of his achievements.   I will always be grateful for the members of his early intervention support team (Infants and Toddlers, OT’s, SLP’s, Kennedy Krieger), who all contributed to his growth. But he still remains diagnosed with autism, and therefore he still needs support. Especially at the developing age of 3.

My son is 2 months away from turning 3, which also is a milestone for eligibility into special education schooling from the public school system. A year ago, I thought he was going to be a shoe-in.   To qualify, a student must be 25% delayed in one of the following areas: cognition, communication, social emotional development, gross motor or fine motor skills. Please note, an autism diagnosis (or any diagnosis) does not automatically qualify you to receive public services (at least not in Frederick County).

Over the past few weeks, my son has undergone a series of evaluations from the Infant and Toddler team in addition to Mullen Speech and ADOS test from specialists from Kennedy Krieger.   The results haven’t been surprising.   He is scoring above average in comprehensive and on track for his age with speech. An estimated IQ of 130.

And then we get to social. The Infant and Toddler test was brief, but he scored at a level of 24 months.   The ADOS is a much more thorough assessment of communication and social play/interaction conducted by Kennedy Krieger. According to the new DSM-5 model (that removed Asbergers and PDD), he is qualified as a level 1. What this means (DSM-5 Model):

Social Communication

  • deficits in social communication cause noticeable impairments
  • Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others
  • May appear to have decreased interest in social interactions.

Behaviors

  • Inflexibility of behavior causes significant interference with functioning in one or more contexts
  • Difficulty switching between activities.
  • Problems of organization and planning hamper independence.

Basically, he still faces many challenges in social interaction. His behaviors are rigid, repetitive, and he thrives in structure.   Level 1—requiring support.

So what is the next step for support?   As for entering the public PreK special education program, I know it will be a fight. The gatekeepers will wipe their ass with his official autism diagnosis, and on paper he is thriving academically in speech and comprehension.   Is the public education system responsible for providing support for my son to help navigate social situations?

There is no doubt in my mind that an inclusion model integrated with typical peers is the ideal setting, however he still needs an aide or teacher to guide him in play or social interactions.

If my son is left unattended with an array of toys, his preferred type of play would be to spin and throw it. Everytime. To the point where it makes me insane, especially when I know he knows how to play with the toy functionally.   While other kids may be stacking blocks or playing pretend with a tea party set, my son is chucking fake corn across the room. And loving every second of it.

I also am not insistent that the public school system is the appropriate solution for him right now, and I am diligently looking into other options including private, ABA, and a typical preschool environment (with support).

Thousands of parents before me must have encountered a similar dilemma. I realize I am a newbie to the IEP and academic process itself, but I am disheartened that there is no value placed on social skills in our county. Establishing friendships, empathy, sharing, and how to join a group—how are these not important life skills? Ultimately, I know my child and what his needs are, and I will advocate and fight for the support that I believe is appropriate for his advancement. Foolish me to think the solution would have been so black and white.

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