The Most Important Thing for Doctors To Know About Autism

bear-1821473_1920

Anyone have a ________who works well with special needs kids?

                                   —every special needs parent on every local special needs Facebook page

Last year was the first time in A2’s entire life he got through a dentist appointment relatively unscathed.  Sure, at first he flapped and screamed and excreted that sweat stench he does as if he is a sea slug attempting to keep predators away, but ultimately Dr. Nate (not his real name)prevailed with him in the most awesome way.  A2 received the first x-rays of his entire life, full dental exam featuring the scrap-y, spinn-y and spitt-y things and actually left the office smiling.

FullSizeRender
No one can resist the appeal of Dr. Nate *powders nose and reapplies lipstick*

That is the thing with ALL kids on the spectrum.  Once you crack the code on how to navigate around or through the anxiety, things tend to go a bit better.

Conversely, the same is true.  Once you REAAALLLY approach something wrong, the damage is done and it is going to take a hell of a lot to bounce back from armageddon levels of panic.

Apparently, Dr. Nate and his swoon-worthy dental practices on my autistic kid made more of an impression on me than we did on him because he didn’t remember his approach from a year ago. At our visit today, A2 was visibly panicking/attempting to act cool and Dr. Nate was taking a more gentle and cautious approach.  In a red carpet level performance, I loudly proclaimed I was going to the bathroom (office visits tend to go better when I am out of eye shot). Without skipping a beat, Dr. Nate said “Sounds good. I’m going to take a look here at A2’s teeth, but you’ll be right back…So…everything is OK.”

Dr. Nate…You know what to say to all the ladies….

Of course, I was standing right outside of the exam room door and I could hear him firmly reassuring my kiddo. I peeked in to see A2 standing in the corner with a toothbrush and the toothpaste from home and the dentist mopping up his face with gauze. When all was said and done, Dr. Nate said to me, “Can you come back in three months?  I think one lesson we learned is it’s best for mom to wait outside. I think next time, I will use a firmer, more direct approach, It seems to work best with A2.”

I thanked him profusely for his insight and patience. He replied “Every kid responds to something different and sometimes even from visit to visit.”

BAM.

Every kid responds to something different.  Even from visit to visit.

Yes, Dr. Nate.  You just summarized precisely how to to work with autistic patients. They are all individuals with individual needs and you must be aware of this at every visit.  And then you meet them where the are.

Pretty much just like everyone else.

While we are at it….a shout out to all the other doctors in our lives who got it too:

To the orthotist who met us in the back of our van for years in order to cast A2’s feet for braces

To the physical medicine doctor who immediately started using sign language while she talked to A2 when she realized he might not understand her words

To the hospital nurse who spoke directly to A2 to ask him his name, age and where he went to school instead of asking me right in front of him.

Medical anxiety is a serious issue for many autistic individuals. The sensory assault, the inability to clearly communicate and the fear of not understanding what comes next can be overwhelming to both the patient and caregiver.  We recently had a specialist appointment where A2 was tearful and fearful.  It was suggested we could move forward with the visit in one of two ways. 1. I could hold my 12 year old down by myself in my lap or 2. the doctor and two office staff could bum rush him and they could hold him down on the floor.

I wondered out loud what it would be like if while we were standing there talking and  out of nowhere two men twice my size came around the corner and held me down while a third approached me and I wasn’t sure what he was going to do. Boy oh boy….if I wasn’t worried about talking in the hall before, I sure would be from here on out!!

It may seem odd to many of us that a doctor’s office would not be equipped to handle their growing clientele of autistic patients, but really, physicians have a limited amount of time to spend with their patients and many of them have absolutely no specific training in disability. As parents, we take it upon ourselves to make certain we take all the precautions with all the details and do all the educating so an office visit goes as smoothly as possible.

Doctors. Take your lead from Dr. Nate. His approach holds the key to your best success with every one of your patients. Remember they are human, figure out what they need on any given day and then do THAT.  Us moms will take care of the rest…..

 

Autism and the Dentist: Top 5 Tips for Successful Visits

How in the world has it been 6 months since I have taken the kids to the dentist? After a rousing success this fall, I thought I’d share this again in hopes we can recreate using my own advice! Any tips or tricks for your kiddo at the dentist?

Running through Water

**DISCLAIMER**.  The first half of this is the How Did We Get Here part.  The second is How Can You Maybe Get Here part.  Feel free to scroll to the second part…I promise you won’t hurt my feelings.

“How’d it go?”  I hacked out with the phone resting between my ear and the bed.

“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.

I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague.  Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when…

View original post 1,301 more words

Autism and the Dentist: Top 5 Tips for Successful Visits

**DISCLAIMER**.  The first half of this is the How Did We Get Here part.  The second is How Can You Maybe Get Here part.  Feel free to scroll to the second part…I promise you won’t hurt my feelings.

How Did We Get Here?

“How’d it go?”  I hacked out with the phone resting between my ear and the bed.

“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.

I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague.  Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when it came to medical stuff.  A2’s anxiety is through the roof if he even THINKS its possible he has a medical appointment.  For awhile I had to drive a different route to the highway because we PASSED THE STREET to his pediatrician on the regular route and we could count on screaming, thrashing and tears until we were well on the road.  He even developed  pre-cognitive psychic abilities regarding medical appointments and would wake up with a big pouty lip with his first garbled words of the day being “no doc-er”.  On a side note, my cat used to do the same thing for vet appointments.  He would already be completely missing by the time I would have the carrier waiting by the door. Maybe my poker face isn’t as good as I think.

I blew my nose without regard to the fact I was on the phone, ” Did you have extra clothes and a towel with you? Is he ok?”.

“Yeah, he’s fine.  But I think we should change dentists…what the hell?”  I knew he was referring more to his own bruised ego but also to having no idea just how difficult dental appointments were.  He had experienced the pre-appointment anxiety and even parts of the wind up to the meltdown but the full on explosion with physical aggression and vomiting was newish for him since this was my area to tackle as a free agent and not a team since I had more work flexibility.  He knew appointments were difficult but I don’t think until that day he fully realized my anxiety and careful planning around the twice a year dental check ups, the annual physical exam, the quarterly endocrinologist appointments, annual neuro, GI and orthotist visits.  In other words….at least once a month I had to carefully plan an entire day around a doctor appointment because I was never sure how it was going to go down.  It takes its toll as a mom.

And the most heartbreaking part for me wasn’t even absorbing A2’s anxiety or physically holding him down or by my own bruised ribs or aching muscles or watching him turn purple and sweaty in hysterics with a handful of my ripped out hair.  No…it was always that moment he knew the appointment was almost over and he would turn his head to the nurse or doctor or dentist and through his hyperventilation and tears he would give them a thumbs up.  Cru-shing.  He knew no one was really going to hurt him.  He likely heard all the gentle words about his safety and social stories about visiting the dentist.  He likely knew this was something we all have to do for self-care. And yet he also knows he has no control over that autistic brain of his to prevent the escalation.  Always a reminder that I just have to try harder for him.

Fast forward to yesterday.  11 years, 2 months, 26 days into A2’s short little place on the planet he had his very first REAL dental cleaning and x-rays.  Mild drama and tears….and he is still proclaiming “no doc-er” this morning. But no contusions, no sweating, no projectile vomiting.  He even left the office smiling covered in Avengers stickers and with an armful of autism-unfriendly prizes from the prize box (see exhibit A ).

IMG_8246
Exhibit A.  Prize box find.  A tiny diaphragm for your kid’s windpipe.

I left the office knowing that my kid had no cavities, no gum disease and apparently he only has one more baby tooth left in his beautiful little mug. So how did this happen?   A2 still hates having his teeth brushed at home….this will likely never be something he ENJOYS. Certainly no miracles and no single place to take credit, but here are some things that have helped.

TOP 5 TIPS

  1.  Find a dentist who recognizes sensory processing issues/oral aversions/autism/mental health issues as real conditions and not as being difficult to be difficult.  Make sure the dentist and their staff are not fearful and can approach your child in a calm but authoritative way.  If you are uncomfortable with any part of the procedure or philosophy or office set up, discuss it with the staff or move on.  And it does not hurt if the dentist is eye candy.  But that is just for you moms/dads….your kid probably won’t care about that part.
  2. Consistency and exposure.  Don’t NOT take your child to the dentist because you think he will wig out.  This doesn’t mean you have to get him in the dental chair right out of the gate if it is too much like visiting with Willy Wonka’s dentist dad.  Take baby steps.  Bring him to sibling appointments. Bring him in between visits just to say hi to the staff, look at the fish in the tanks, or check out the new toys or stickers in the prize boxes. Read books about going to the dentist. We took pictures of step by step A1’s appointments and made a social story for A2.  Reward approximations toward compliance.  Document it for yourself so you can increase your expectations of him as you move forward.
  3. Bear in mind what triggers your kid and plan for it.  While you don’t want to sneak attack your kid when it comes to appointments, if you know that too much advance warning will cause perseveration without extinguishing his anxiety or will cause escalation in the days ahead…then don’t tell him yet.  Figure out the “sweet spot” for that.  For A2, we nebulously talk about dental things between visits and tell him about the appointment in the car the day of.  Other kids all is well and good until they see the dental equipment.  Find out if there is alternate equipment available and have them use it while exposing him to the stuff that scares him.  For years, we used cups of water instead of the squirt gun and suction thingy from hell.  We used a regular tooth brush and the toothpaste from home.  The dentist wore my sunglasses instead of the big, nerdy lab glasses.  And for the love of all things holy….if your kid is a puker…DON’T feed him before the appointment!
  4. Talk to others. Discuss the issue with a speech therapist to see if there are oral motor exercises that will help desensitize him before visits.  Your BCBA or psychologist should also have a trove of ideas or may even work on this as a behavioral goal with him.  Talk to the intervention specialist–especially if she is very experienced because it is likely she has helped other families in the past come up with ideas tailored to help specific problems.  She is likely the only other person who knows your kid’s quirks or difficulties with compliance and is constantly planning for it. Consult your autism village…another parent might have a helpful hint for you.
  5. Know Thyself.  I no longer martyr myself when it comes to appointments.  My husband did not know I was heavily grieving and fearful of these appointments and I think he started recognizing my anticipatory anxiety as such instead of just assuming I was being histrionic.  If you need to trade off…do so.  It doesn’t have to be a spouse.  Your kid picks up on your anxiety even if you think you are cool as a cucumber….but you already know this from other experiences. You see cukes…he sees pickles. Ask for help if you can.  Leave the room if he is more compliant without you being present.  Do not see it as a failure if you cannot overcome this hurdle. Many families cannot.  Contact your local chapter of The Autism Society, Autism Speaks or Board of Developmental Disabilities to help you locate a clinic that is trained and licensed to sedate or restrain as a last resort.