Tuesday, January 29, 2013

Make Room for ASD

There is something I have wanted to write about. But every time I start to I feel like I may offend people in the special needs community. I feel as if I am complaining about something I shouldn't. There is the typical world and the atypical world. And we are a minority in both. We have one foot in the typical world and the other in the atypical world. Do you know what I am talking about? Autism, pdd-nos, Aspergers, verbal ASD children.(these all and many others apply)

Boss Lady's disabilities are not concrete if you glimpse into my world for 3 minutes on a good day you would not suspect a thing. If you glimpse in on a bad day you would see what I was talking about. This may be an internal thing, but I feel like there are times I have to prove Boss Lady's Autism to people. You may think this is demented or berserk but there are times in front of a certain company of people, I feel a sense of relief when her behaviors peek through. SICK RIGHT? I think many parents in my position feel the same way. I am a bit conscience stricken of this feeling. It is for the people who tell me she is fine or JUST DO NOT GET IT.

I am tired of the school district saying "But she scores so high cognitively and is verbal" That is probably one of my most hated things said to me. I can not even celebrate my daughter's brilliance because her scoring high cognitively means she may lose services. So a part of me has to be concerned if she is scoring too high. Before she was diagnosed she actually lost special ed services because she was "scoring so high", let me point out she still was not answering to her name, she was not pointing, and she had a lot of other issues. But because the monthly test, that is not designed for all children, said she was cognitively FINE. Yes she could list ever color,shape, and identify numbers and letters. The picture was bigger than this and still is. Why aren't different tests devised for children like her? It does not make any sense to me.

There is so much more to ASD than cognitive functions. There is behavior, motor skills, social skills, sensory processing disorder, which is not even acknowledged as a true disorder. Yes she scores high cognitively because part of her Autism is a great memory. They are little tape recorders! She retains a lot of information, but a lot of this is just spitting out the recorded information. The amount of absorption is unknown.

I was at a birthday party recently and a mother of a typical child, who is in an inclusion class with a handful of children that are on the spectrum, tells me that the Boss does not look autistic and I should not tell people she has autism. I am not ashamed of her or her ASD. Right then and there I realized there is so much more that needs to be done with in the ASD community. These kids are being misplaced in schools and schools are not educating the parent population or the typical children on ASD. It's a hush hush topic. We are not allowed to be proud or open about our ASD kids in the typical world, but the school districts forces ASD kids into inclusion classes and into this world. The kids on some occasions get bullied or the regular education teacher does not handle the ASD child properly and the child "explodes" and then is sent back out of district. 

Now the child is in a school for special needs, and she begins to score high cognitively in her new school. She has no visual disabilities. Other parents wonder, why is this child even here? She looks totally fine. and so on. I feel unpleasant even opening about this and I feel bad comparing myself to a mother who has a child who is severely disabled. Why should I complain, sometimes Grace's issues seem so much smaller to me in comparison to many in the special needs community. I read a blog by NT mom, and I identified with something she said. She explained how ASD is on the outskirts of the special needs community. Where do we stand? Where is Grace's place in the world?

There is a continual battle for us on this part of the spectrum. I am always wondering what is best for Grace. Second guessing every decision I make for her education. I have to fight for her and her diagnosis, especially when I am in the presence of uneducated people. The numbers of ASD are rising but for some reason the awareness level is so trying. If the school districts want our ASD children in district they need to not only educate our children but educate everyone else who will be around them. Our kids work so hard endlessly each day to cope with our world. Is it too hard to ask for the Typical world to work to fully understand and accept the ASD world? 

"What you deny or ignore, you delay, what YOU ACCEPT you conquer."


  1. I get it. Alyssa, has posted stuff before that sort of ties into this...her words, High functioning needs get ignored, low functioning abilities get ignored.

    But there's definitely a group out there just going...pfft..Autism? That kid doesn't have anything wrong with her that a little discipline wouldn't fix. Right??

  2. My daughter gets some of that, although she is clearly delayed once you spend more than five minutes with her. The casual observer will look at her laughing and talking a little and think "She's just being a brat, she's not autistic."

    I want to strangle those that would make a pop-decision about a life-long challenge. The same goes for those who 'blanket' their treatment (read disenchanted or over-worked teachers who don't know how to handle ASD kids).

    You should not feel guilty for the level of challenge you face. Your challenge is real, personal and worth every second of your blood, sweat and tears. Keep up the good fight, Momma!

  3. Right on with my line of thought again! I get told constantly, that because he is smart,and shows emotion,there's no way he's ASD. And dont get me started in the school sysyem. I'm right there with ya in this one!

  4. While we haven't encountered this situation directly, I can say that our system seems to set these situations up. We operate in a deficit-based special education system, one in which parents have to emphasize deficits in order to get support for their child's needs.

    And it sucks. Wouldn't it be nice if our educational system started focusing on what children needed rather than putting such an emphasis on proving deficits? It would be nice to see educational programs designed for each child's individual needs, be they a NT child or SN one.

    Until then, just keep fighting, mama! Hopefully your school system will give - and continue to give - your little girl everything she needs to learn and grow.

  5. We are right here with you on this one! James almost lost his educational ASD diagnosis this year and I almost had a panic attack. I am thrilled that he is doing so well in a mainstreamed class without an aide really I am. But there is always that big what if... James qualified for an IEP though speech so I was able to breathe a little easier. Now we are looking at the nitpicy parts of his Autism. Anxiety being a big one. Non compliance (he also has a diagnosis of combo type ADHD) is another. Those are things that will be targeted on his IEP when we have it in April. Now that his Autism is almost invisible, more invisible than we all think Autism is, we need to look even closer. Thanks for posting this. It is a very important topic that I may try to conquer on my Laughter, Could be the Missing Piece blog

  6. I feel the same way sometimes. Most people don't realize Hayden is disabled when they only spend a few minutes with him. I am grateful for this and also annoyed.

    I can't qualify for DPWDD or Medicaid waiver because his adaptive scores are too high yet he can't climb stairs, open a door, get up from the floor unassisted or even turn his wrists or feed himself with a spoon. He's disabled but not disabled enough, depending on who is making the decisions.

    Sometimes I feel like screaming because my day was so difficult and my back always hurts from lifting him and never getting to relax because he needs to be watched 24/7. It's sick because I wish those close to me see what I go through and how hard it is. Then I'm ashamed of feeling this was because I know other people have it much worse.

    Most people just don't get it. If they aren't living that life they just won't understand. That being said, there are a few wonderful people who understand how we feel and won't judge.

    Grace is a remarkable little girl because of all her wonderful gifts, including autism. Thanks for sharing something so honest. I 'm glad to know I'm not the only one feeling this way