Asperger’s – Lost through the cracks

October 30th, 2012

Asperger’s: Lost through the cracks

by Holly Bortfeld

I have two children with ASD. My son has moderate autism and my daughter has Asperger’s Syndrome.

My daughter’s symptoms didn’t start until she got a round of routine childhood vaccinations known as “Kindergarten boosters” (the glut of shots given just before a child enters kindergarten). She had never been sick, and to this day, she’s never even had so much as an ear infection. But within days of that round of shots, she went from a typical child to a child with severe attention issues. Three weeks later, she entered school at just 5 years, 3 weeks old, the youngest in her class.

Kindergarten was a breeze for her since she could already read, but first grade came with more issues. The kids were expected to follow multiple-step directions and global commands (like “go clean your room” rather than breaking that down into steps like: make your bed, put your clothes in the hamper, put your toys away, etc). My daughter, however, was having a hard time with these global commands. The school agreed to evaluate her. Despite a 135 IQ, she lacked age-appropriate social skills and had multiple delays in processing and attention. This was about to set off our first experience with the school systems criteria of “Not delayed enough”.

I met with my daughter’s teacher about the issues she was having in class and worked out some in-class modifications like writing the steps down for my daughter so she doesn’t forget what to do next. I asked if that was all there was available to help her and was told yes, because the evaluations showed she wasn’t “delayed enough”, that was all they could do. We sought private help for Central Auditory Processing Disorder, functional language therapy and NeuroNet, which helped greatly. That worked until we hit middle school, then all hell broke loose.

A note, we had moved from Florida to Pennsylvania for better autism services between fifth (elementary school) and sixth grade (middle school). While my daughter was fully evaluated back in Florida, we didn’t allow a formal diagnosis of Asperger’s until we moved to a state that Asperger’s qualified for services. There just wasn’t any point in it and we didn’t want it hampering insurance coverage when it wasn’t a covered diagnosis in Florida.

Middle school (aka Junior High) means you don’t stay in one room all day with one teacher. It means 5-7 teachers, in separate classrooms, lockers, hallways and pandemonium for a child with organizational issues. In short, it was terror. She would show up to math class with her English book and science homework. Color coding helped some but she ended up having to go to ‘resource room’ every morning to get organized for her day. The school asked to do more formal evaluations and I agreed. Their outcome was that she was too gifted for their school but rather than modify their program, they wanted her to attend the high school instead. At age 11. Without an aide. I realized that they’d have eaten her alive, so I pulled her out and homeschooled her until her junior year in high school.

At home, we could make any and all necessary accommodations and provide any needed therapies to help the commonly co-morbid issues that many with Asperger’s Syndrome have like attention issues, semantic-pragmatic disorder, central auditory processing disorder, prosody, functional problem solving and social issues. We hired private therapists to address her issues. Because we had seamlessly made accommodations at home, when it was time for her to re-enter public school, we had no idea what accommodations she may actually need.

She went through a complete battery of evaluations at the school which meant days of grueling, inane questions for her. The result: “Not delayed enough. Doesn’t qualify for an IEP.”

Did they agree she had issues with processing? Yes, just not enough. Did they agree she needed social help? Yes, but they don’t provide that. Did they agree she needed functional language help? Yes, but that’s not an educably-necessary service. Did they agree she needed accommodations? Yes, but only on a 504, which isn’t even a legally binding agreement. That was it. It wasn’t enough.

Then came time to graduate and go to college. As with many people with Asperger’s, my daughter could not make the transition alone. She had to have ongoing therapy and help to do everything from navigate the campus, plan out her days, advocate for herself with her professors, apply for scholarships and drive a car. A lot of help. None was offered to her by the system. We had to provide it all.

How did we get here?

Here is how it happens. You bring your child to the “experts” and they say your child is:

  • Not delayed enough to qualify for IEP, so you get a 504.
  • Not delayed enough to qualify for SSI, so you get nothing.
  • Not delayed enough to qualify for services, so you get nothing.
  • Just quirky, so you get nothing.
  • Not really ill, so don’t run tests.
  • Is verbal, so doesn’t qualify.
  • Is REALLY smart, so you get nothing.
  • Just not “bad” enough to qualify for help.

What happens when your child doesn’t qualify for any help?

  • Nothing, unless you go get it yourself.
  • Use your insurance, and seek therapies privately.
  • Work on the missing skills at home.
  • Get an advocate and fight for services.
  • Find other ways to get your child qualified – other diagnoses, other programs.

People with Asperger’s Syndrome are often said to be “high functioning” with the assumption that they don’t need much help and their outcome will automatically be better. Until you ask people with Asperger’s. Many categorize their situation as “severe, despite appearances”.

  • People with Asperger’s have an 85% unemployment rate
  • Only 53% get SSI – meaning 53% live below poverty line and 32% get no help and have no jobs either. We have to assume those people are living with parents or on the streets.
  • Underemployment rates are nearly 100%.
  • Higher rates of suicide and depression.

Does that sound like a better outcome to you?

Letting kids with Asperger’s fall through the cracks in the system cannot happen. Just because they are “less” affected with autism, doesn’t mean they are less affected and don’t need help. Their life outcomes are drastically worse if they do not get the help they need.

Asperger’s is not a barrier to awesome
“Aspies” can do so much! They can have real jobs, not just busy work. They can have relationships, contribute to society and be completely awesome, like my daughter. They are unique, creative and full of energy. After all, who else is going to create a 2 foot tall gingerbread Godzilla demolishing the Golden Gate Bridge and all the little gingerbread men with jelly sharks with lasers on their heads? (Yes, my daughter did that!) But they may not be able to do those things without help, without services, without backup. Get them what they need and watch them soar!

Many of the same treatments and therapies that work for people with autism, also work for people with Asperger’s Syndrome, such as GFCFSF Diet, Biomed, physical activity, self-regulating techniques and require lifeskills, social skills and safety awareness. Set them up for success and they will amaze you with what they can do and how far they will go!

Resources

Anxiety in ASD

New DSM5 eliminating Asperger’s

Self-Advocacy and Self-Esteem

Social Skills

Life Skills

Transition IEPs

How to begin the diet with Asperger/older kids

How to begin biomed with Asperger/older kids

Teens and College

Teens and Driving

Suggested Reading:
Asperger’s on the Job: Must-have Advice for People with Asperger’s or High Functioning Autism, and their Employers, Educators, and Advocates By Rudy Simone

Therapies for CAPD

TASH for employment

Asperger Syndrome Training & Employment Partnership

GET CONNECTED
Autism Journey Blueprints
Parent Mentor Program
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2 Responses

  1. [...] symptoms of Asperger’s, “Aspies” can do anything! Without those skills and supports, however, the outlook is not unlike that of people with autism. There is much work to be done, but a great hope for the [...]