Friday, February 6, 2009

How Invisible Disabilities Are Not Always Accommodated

"You can just wait like everyone else" a sour faced receptionist shot at me. "You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is." No. She. Didn't. She didn't just go there. It's 7:05 am at a Lab Corp facility where I need to get my daughter's blood drawn to check her med levels. The tiny, sterile waiting area is wall to wall with people, spilling out into the halls. The wait is likely close to an hour. My child, very severe on the autistic spectrum, does not handle crowds, cramped spaces, uncertainty, waiting, and other general realities of life very well. As she is utterly non-verbal, she has no other way to communicate her discomfort other than behavioral meltdown. I'm completely in a panic and feel the hundred eyes in the waiting room on me and my "different" child. People shift nervously in their seats as my daughter jumps, squeals, moans, drools, hits, and otherwise does not act like a typical citizen in a typical waiting room on a typical day. I feel like I have to apologize for being out in public. For corrupting their "normal" lives with the abnormality of our presence. When I realize the length of the wait, the conditions of the waiting area, and my child's difficulty with such sensory overload, I start to deliberate whether or not I should ask the staff people if any accommodations can be made for my daughter. She also has Emla Cream (a topical numbing agent) on her arms to prevent pain upon blood draw that would wear off in about 30 minutes. Without her arms numb, she will kick, spit, bite, freak out, and become traumatized by yet another medical procedure that she has endured over her entire lifetime. Flushed, feeling conspicuous, fragile, and anxious I go to the front desk seeking assistance, empathy, and yes, I suppose a little special treatment. What I get is the quote with which I opened this post from "Sally," a phlebotomist manning the front desk. It's interesting to me that there are people in this world, although certainly few and far in between, who look upon parents of special children in this way. That we are using our child's disability as an excuse or a rationale for a free handout, special treatment, attention, or accolade. Unfortunately, this poisonous attitude seems to be reserved for the disabilities that are less physical and perhaps less easily understood. When a child has ADHD, Conduct Disorder, Intermittent Explosive Disorder, Autistic Spectrum Disorder, Tourette's, or a psychiatric diagnosis they sometimes are seen as having more control of their undesirable behavior than a child who physically appears different (as a child with Downs Syndrome, Multiple Sclerosis, etc). Often times the implication is that it is the remiss, lax parent who cannot "control" their child, and not the child's disorder that is at the root of the problem. Our society has certainly come a far way from the "Refrigerator Mother" theory of Autism, but at times like this, I see that not everyone is as enlightened as I might have assumed. Clearly Sally felt that any special treatment my daughter would receive was undeserving. In her words, her accusation, my daughter could "wait like any other child." No, you compassionless, ignorant shrew, that's the problem: She CANNOT wait like any other child. She is NOT any other child. She is not in control of herself. Her AUTISM is in control. Her brain is structurally different. She has chronic static encephalopathy, generalized seizure disorder, severe to profound cognitive impairments, sensory/nervous system deficits and Autism. She is disabled. She looks rather "normal," but she is disabled. My God, she eats her own sh*t for heaven's sake! She cannot "wait" in this overcrowded, fluorescently lit waiting room without making everyone's life a living hell. She is not spoiled. She is not poorly disciplined. She has Autism. Ever hear of it? She is 13 years old and she cannot dress herself, bathe herself, pee on the toilet, take care of her menses, buckle in her own seat belt, open a container, brush her hair, say "Mommy" or anything more than the 8 word approximations that comprise her vocabulary. The audacity of me to request a little special attention! I am so sorry. How dare I cash in on a no-wait pass at Disney or a little respite care through Division of Developmental Disabilities. What a heinous, self-serving mother I am! And, to expect a little help at a facility that provides patient care? I am so used to getting my ass kissed because of my child's special needs that it certainly makes living with Autism so rewarding! Boy I'm making out like a bandit, alright. I get to cut in line at Lab Corp, which certainly counterbalances the fact that I also get to clean up her almost daily fecal smears, worry about her running away, spend about a million dollars to take care of her the rest of her life, and manage every aspect of her self care. I get to stress about the severe seizure disorder that has landed her in the hospital numerous times starting at 4 months of age. A seizure disorder that could realistically be the death of her. Please forgive me for my selfish request. I am not worthy. She is not worthy. She's only autistic after all. She'll manage. We'll sit and wait like everyone else, because after all, we ARE like everyone else, aren't we?!? So, what's next Miss Sally? Will a person confined to a wheelchair have the audacity to ask for a ramp? Will a blind person have the presumption to ask for signs in Braille or permission to bring their seeing eye dog into the waiting room? Last time I checked, accommodations for disabilities was the law. Last time I checked, Autism was a disability. Autism does indeed suck, but there is one thing that sucks even more. The attitude of Sally and others like her. An attitude of ignorance and hurtfulness, wielded like a dagger; slashing at a wound that has already been hemorrhaging for years. A wound only a few ever bother to see. Alicia D. is the mother of 4 young children, her eldest is diagnosed with Autism. She is a Stay At Home Mom with a Doctorate Degree in Clinical Psychology, which is only useful if she's trying to be intimidating at an IEP meeting. Alicia is also a budding freelance writer and blogs about the mayhem of motherhood at Welcome To My Planet .


  1. So sorry you have been dealing with this... many people just don't understand, and don't want to. Thanks for sharing your experience and welcome to Autism Sucks (of course you already know that...)


  2. OMG!!! See this when I ask for the person's boss and the CEO of Lapcorp and I send a nasty nasty note. We have to take our son for bloodwork soon and the new insurance uses Labcorp. God help them.

  3. I totally agree, the ONLY thing worse than actually dealing w/ the autism, is dealing w/ peoples REACTIONS to autism...the most peaceful day of my life was when the local autism chapter sponcered an autism night at a waterpark...for the first time we could have meltdowns w/ no judements...hand flapping and stimming w/ no starings, and we could just be free!

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  5. WOW, I think sending EVERYONE at Labcorp a copy of this would be so helpful. This is precisely why the truly ignorant opinions of people like Michael Savage and Denis Leary are so HARMFUL. Their poison spreads out to the general public and makes an already very difficult challenge much much harder. Thank you for posting this, I want to print it and hand it out to every healthcare worker I come in contact with.

    PS I deleted the comment above because I discovered a typo.

  6. I am so sorry you are also living with the nightmare of autism. Love the kiddo - despise the autism. This sounds very much like my day. My baby is a boy, though, so we don't have the periods.


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