A Parent’s Prejudice Against Asperger’s

This story also appears on Trusera

“Oh, your kid only has Asperger’s; you’ve got it easy. Try dealing with my life and my kid for a day.”

Ever heard that before? I heard this from an autistic kid’s parent just this week. At first, I guess I found it hard to believe that someone would explain what I deal with daily as “easy”, even comparatively. And, though I made no formal reaction to the comment, it did make me think about how there seems to be a division of opinion towards differing functional levels in the autism spectrum.

After some thought, I realized that I’ve heard the same comment before, just presented in a slightly more elegant package. In fact, even in some LAUNCH classes I took right after the diagnosis, I noticed parents would have different levels of empathy when talking to other parents.

I don’t try to hide my son’s condition, though sometimes it doesn’t really show through and a bystander may not notice any difference from a NT kid (a common theme with Asperger’s kids). Does that make life “easier” than a parent who nurtures kids with lower-functioning autism?

If you parent a kid with (what I call “classic”) autism, have you ever thought this; or, if you parent an AS kid, has this ever happened to you?

IEP for ASD Parent-Teacher Conference cliffs notes

This post also appears in my journal on Trusera

I went to the first kindergarten parent-teacher conference for my AS son today; although this is not the first time I’ve done conferences (2 years of them in preschool), this IS the first one I’ve attended where there is 1) an established, finalized IEP and 2) an official diagnosis of Asperger’s Syndrome from a developmental child psychologist. Here are my notes, intended to serve as a guidepost for other parents who may be experiencing this for the first time.

I should say, my child has AS and attends a “regular” public elementary school. I visited a few special schools for more ASD-style therapeutic learning opportunities, but his IEP indicates 80%+ regular classroom (he actually takes 2hr/wk out of class), so I couldn’t justify the (wow, large) expense of the optional school.

The typically-developing child’s conference is a meeting with just the teacher and possibly a teacher’s aide. My meeting was attended by the teacher, the speech-language pathologist, the ECSE, and one of the district psychologists, as well as the dean of students. Don’t be overwhelmed by the folks who are there to both give out and receive information; they truly represent the child’s full range of experiences while at school and can offer a varying opinion base as to why certain situations may be more troubling than others.

It always helps to have the child’s home experience in mind when listening to the descriptions of school interactions. If they are similar, good; if they are vastly different, start thinking about how they are situationally different. In my case, they are somewhat similar, but there is more structure at school so he is very successful in that mode.

Take notes. Ask questions, especially of the teacher. Hopefully the teacher will have a journal or some form of catalogue that demonstrates your kid’s progress over time. If they don’t, suggest it, even if it’s for your kid. If it gets testy, ask for an IEP review and document it there (and maybe consider if you’re at the right school).

Share your experiences at home with the child. The school staff only has half of your picture – when they are telling you about the school experience, you’re getting the whole picture and you will probably have a few “a ha”s – the school staff will likely have the same if you share some backstory with them.

If you are doing a full IEP review at the same time, ask for a copy of the meeting notes and make sure to reserve some time for thought about possible changes or time allocations to the SPED services that are available. For AS, many school districts have a social skills group that would be a great suggestion as part of the kid’s at-school experience. And – it never hurts to ask what the staff thinks should be changed, if anything; you may disagree with their opinion, but the IEP is yours to modify.

Hopefully these things help.

Stumping for Colorado A51

This post can also be found in my journal on Trusera

In Colorado there are 12,500 people on the waiting list for developmental disability funding that enables them to (afford the ability to) participate in treatment programs. Out of that number, 2/3 are on an immediate waitlist – meaning that they are only waiting for money to become available.

Colorado is voting on a state statute titled Amendment 51 which provides the additionally-needed $185M to essentially end the waitlist for developmental disability treatment. This money comes from a 0.2% state tax increase (2 cents per $10) phased in over 2 years.

Although my child has AS and is not on a CCB waitlist because his condition is mild (and we don’t want to take away someone else’s opportunity when they need it more), I am surrounded by families who struggle every month – who have to choose between therapy and life necessities.

It makes sense to approve additional funding, even with the current state of the economy – those who are on the waitlist or who are paying with their retirement funds to treat their 3 year old are impacted much more severely under the current conditions. Though opponents say that this extra money could be gathered by reallocating how Colorado spends its current funds, there haven’t been any plans created by opponents which detail how to allocate $185M with a zero net change to the taxpayer. I would suggest that the opponents of this measure are not among those who are in touch with the 12,500 people that can’t get a fair shake.