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Hidden Costs of Autism: Fighting Tooth and Nail for Realistic View

Keith Dental ExamBy Kim Stagliano

I was scrolling down my Facebook wall earlier this week when this photo caught my attention.

This is Keith, a young adult with autism, and son of my friend Crystal S.  I asked her if I could share this glimpse into the version of autism often (purposefully) overlooked by self-advocates and the general media alike. While Keith himself is a handsome guy,  his autism is considered kind of ugly by those who only want you to see shiny, happy fairy tales. 

So... What is happening to Keith.

Is he having heart surgery?
No.

Is he having his appendix removed?

No.


Keith is settled into a hospital for a dental appointment. That's right. Anesthesia, a day off for Mom who is a behavioral consultant and in school to become a certified teacher, and then recovery. For basic dental work.

Imagine the anxiety for Keith.

Imagine the lost work hours for Mom.

Imagine the juggling of other children - to get them to school.

Imagine the cost.

This is autism - and there are tens of thousands of Keiths growing older every day.

Kind of bites, doesn't it?


House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

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Dental visits are just the tip of the... I was going to say iceberg but going with Kim's analogy of biting, I'll say Sharks Tooth. The issues that cost are too numerous to mention. In our case just one of the myriad is costs is glasses. My son's eyes are bad, he needs glasses desperately, but an hour into his second time wearing his $180.00 glasses he got away from not 1 but 2 staff, took his glasses off, broke them into 4 pieces and popped out the lenses and threw them in the trash at a public park. One of the staff got to spend 10 minutes digging through the trash to try and retrieve all of the pieces. 6 years later and I still haven't really attempted the glasses again because trying to be on top of him every second is like trying to nail jello to a wall. Its sad he has to suffer with bad eyes which in turn has affected his posture (he is always looking down to see where he is going.)
Sick to death of the shiny, happy, Autism isn't all that bad stories.
Kim is right IT BITES

@ Sarah

Following a horrid experience in my late teens I became a very nervous dental patient. Some years ago, between then and now, one dentist used to use one of his fingers to put a few drops of anaesthetic (novocaine?) on my gum a few minutes before carrying out the injection itself. This meant I didn't even feel the needle just the pressure. Hope this helps if your son ever needs the novocaine.

We were so so lucky to find (11 years ago) a dentist who understood, was open to and encouraged us to bring our 3 yr.old severely autistic and newly diagnosed son to his office in a long series of visits to gradually accustom and desensitize him to the rigors of a dental exam. The first few times, just saying hi and sitting in the waiting room. Next, exploring the inner office and peeking in the exam rooms. Then, using the restroom and entering an exam room. From there it was sitting in the chair, then moving the chair, then turning on the light, then allowing the face to be touched. Each little step was treated in a gentle, supportive way. Our now 14 yr. old looks forward to his visits and even tolerated a filling w/o novocaine (he couldn't stand the injection). This is just to illustrate what the right dentist can offer and what parents should be requesting. We were not charged until our son was ready to submit to the first exam. This dentist is in Spring Valley, NY and I'll bet there are a few more out there who would be willing to help with the parents' guidance. Certainly not all or even many, but a few. We need to raise the bar on what we expect from doctors and dentists. Start young and ease the sensory experiences for the children, with lots of support. Help to educate the open-minded professionals in an equally supportive way. If we don't try, no one else will.

Dreading the soon to be removed wisdom teeth; lots of planning.
We've been lucky for dental cleanings & minor dental work.
It will require one day in the hospital for iv fluids
and just praying the following days are fast healing.

I pray that Keith does well and that his family feels peace of mind. We had to do a sedation visit for Ronan in July 2011. Ugh. Ronan was nervous. I was very nervous. Who wants to put their kid under heavy meds for a simple teeth cleaning and to check for cavities? Nothing is simple with autism, though.

We are now tip toeing into using a regular dentist. Just this past Tuesday Ronan went for a "happy visit" to a new practice. He got to just check the place out with no pressure to do the entire exam just yet. He was calm and curious. He watched and listened to everything. We did try to get him to open up to get a closer look at his teeth, but he got nervous and clamped his mouth shut.

Before we left, I took pictures of the room, the dental tools and the chair. Normally Ronan doesn't like his feet leaving the ground, but he was delighted to feel the chair go up and down. He happily signed "up" and "down" asking the dental tech several times to make the chair go as high as it could and as low as it could. The dental tech, who has a child with special needs herself (not autism) offered more compassion than dental know-how that day. Because of that, Ronan walked out happy with no anxiety. He signed "thank you" to the staff and walked with ease to the parking lot.

I know we'll be doing a few happy visits before Ronan is really ready to go through an entire exam. We'll most certainly have to try, try again as we usually do making sure the actual appointment is a success. Thankfully the dental team told us they are ready and willing to work with Ronan at his pace.

P.S. I have a short piece going into the next Autism File Magazine in the Q & A section about this very subject...hopefully families who face struggles with dental exams like Ronan has will benefit from the few tips I was able to offer.

We have to sedate every major visit, and nitrous for cleanings. We have been lucky enough to find a special needs dentist who is patient and kind. Before her we went through 4 dentists and were asked to not come back. I guess people don't like getting bit and clawed

When my son was a young adult and complained that his teeth hurt, this happened to my son for oral surgery that is usually done at the oral surgeon's office. Oral surgeon recommended wisdom teeth pulled under general anesthesia in hospital setting since son was already on so many meds (MISdiagnosed at the time with schizophrenia! Yes, it has been a roller-coaster journey, as all autism parents can attest to.)
Thankfully all the hospital professionals were standing by, and oral surgeon discovered acute abscess in wisdom teeth as he removed them, so that was what was causing his teeth to hurt! As with many autistic people, pain is not cognizant until it is serious.
Of course the bill was much higher than a usual wisdom teeth extraction because of the use of hospital bed for one day (not even a night!)

Dental visits are challenging no matter where you fall on the spectrum. My son is considered high functioning and still presents a major challenge at visits due to his sensory issues. He can't bear the light in his eyes or anything in his mouth and has to take frequent breaks. Luckily we found a patient practice and a wonderful assistant who sings to him while she cleans his teeth. But not after having a few clunkers that were impatient. Also because of mitochondrial issues we have to be cautious with any use of sedation/nitrous oxide. I hope we won't have to have any major work done that would require this. Just another example of a routine task that presents a major challenge that typical parents don't even think twice about.

I know this all too well. My 2 higher functioning ones can handle cleanings and get a filling with nitrous. My low functioning one has to have a private room, for a cleaning if they need X-rays or cavities filled, we have to go to the hospital to be sedated. Thankfully, our dentist is pretty good with special needs kids and the hygienist has a child with autism. They have been a blessing.

funny you should bring up dental care. we are off to the dentist for a cleaning today. Yes, every time Josh has more extensive dental work, we have to do it in a hospital and worry about putting him to sleep for an extended period of time. Ugh! and I might add getting him to take care of his own teeth is like getting AS to do true environmental research for autism.
Maurine

Yes, this is the life!! My then 4 year old had so many oral sensory issues that resulted in needing 4 front teeth removed and all molars capped. Hospital stay and all. I was so lucky to find a very good dentist that welcomes and understands children on the spectrum.

Cody requires sedation for dental not only does Cody require sedation but when he has an appointment at KKI both kids have to miss school because its always so busy up there we never get in on time and no one would be home when the other child got home from school and our Autism doc is 2 hrs away Its not so much an issue now because Now both my kids have to see the autism doc so he just sheduals them together

My 26-year-old son Ben bolts when he sees a dental chair. He has to be examined with a flashlight.

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