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What Doctors Don’t Get About Autism Parents

What Doctors Don't Get About Autism Parents


Not sure what this post is gonna be about yet.  And based on the title it might not be the post you were expecting.

The idea for this post has been in my head for a few months now…ever since I attended an autism conference a few months back.

At that autism conference were a lot of bio-medical doctors and medical professionals who were recommending lots of different / alternative treatments for kids on the spectrum and suggesting lots of different / alternative medical tests for autism parents to consider running on their asd kids.

And this post is not about bashing any of those treatments.  I’ve written before how we tried many of these treatments years back and…
I believe that some of those treatments work!  When people rave about the amazing improvements in their kid after ___ treatment I don’t think they are lying… and I am truly THRILLED for them.  They just didn’t work for my kid.  I covered my take on biomedical in two posts that you can read HERE & HERE

Anyway, so this post is not about bashing any of those treatments.  This post is just about the look I saw in some of those parents’ eyes at that autism conference.  How overwhelmed they looked.  Some of them were at this conference for several days and their heads were spinning.

And I know that feeling.  I remember feeling that way.

And it’s not a feeling of disillusionment.  It’s a feeling of hope…. “if it worked for that kid maybe it will work for mine”

but it’s also a feeling of “where the F do I start?  Which treatment should I start with?”

And it’s also a feeling of “How the F am I going to be able to afford this?”

But it’s also a feeling of “how am I going to get my kid to do this or take this or sit still for this.”

That’s what this post is all about.

This post is about the fact that most doctors don’t have a freaking clue how difficult some of these simple things are for our kids.

One bio-medical protocol required parents to bring their kids in for blood work every 3-4 weeks or so.  Simple enough, right?
No.  Not simple for my kid at all.

Do you know how hard it used to be for my autistic kid to sit thru blood-work.  Do you know how many phlebotomists (the folks who draw the blood) he’s kicked.  Do you know how many times we’ve put off getting blood work done because wifey or I weren’t in the right mental mindset to take that on?

I would book the blood-work appointment three days in advance and then stress about it for three days… and then if my son gave any indication of having a rough morning I’d cancel it last minute.

This holds true for any kind of needles.  Needles for drawing blood and needles for injecting something (like vitamin B12 injections).  They can all be torturous for our kids.

Now I know many doctors would think we autism parents must be crazy for shying away from even trying a new treatment because of our kids fear of needles…

But do these doctors have any freaking clue how difficult needles can be for our kids?  Do they realize that it’s many times a two parent job?  That means that still to this day, any time my kid needs to get blood drawn or an injection done I need to take time off from work so that he can sit on my lap while I pin his hands down, and wifey holds his legs down so nobody gets kicked.

Most doctors don’t have a clue what goes in to the planning for even the simplest thing….

Taking vitamins?  Supplements?  Any pill?  I didn’t think that my kid would ever get the concept of take this pill and wash it down with that water.

And he still doesn’t get that concept.

One of the greatest days of my autism parenting life is the day that I realized that if you put a pill on a spoon with some baby food he would swallow it down no mater the size… stuff on spoons he will swallow…

but that’s just my kid… many other kids on the spectrum can’t or won’t take pills… or if they will it’s a DAILY BATTLE.

But many doctors don’t have a freaking clue how hard something as simple as “have then take this pill twice a day” can be for our kids…

And of and it’s not just many of the autism doctors who are pushing the bio-medical treatments that don’t have a freaking clue… I’m not singling them out in their clueless-ness of the realities of being an autism parent…

it’s many of the regular doctors as well.

A couple of months back we thought my son broke his finger.  The doctor recommended an xray to make sure… and my instinct was to say “nah, let’s just wait and see what happens”

My doctor must have been thinking.  “What they hell is wrong with this parent?  Wouldn’t he want to know immediately if his kid has a broken bone?”

Of course I would… but does this doctor realize that taking my kid to get an xray requires us to give him benadrl and melatonin in the middle of the day so that hopefully he will be sleepy enough to keep his hand still long enough to get an xray.

years back they thought my kid was going thru advanced puberty and one doc recommended he get a special “bone age xray”.

“What does that entail doc?

“Well he just needs to keep his hand perfectly still for 3 minutes”

“Yeah that’s not possible… at least not while my kid is awake”

So we put off the test until wifey and I were both mentally prepared enough to handle it.

Then we stuffed him full of benadryl and melatonin and waited for our zombie boy to be completely sleep enough to get his hand onto the table for 3 minutes straight.

I think we were there for over 3 hours.

I could go on & on.  Most doctors don’t have a freaking clue what we have to deal with

Forget about bringing my kid to the dentist.

We gave up on brushing our kids teeth years ago… literally just gave up… he won’t let us in and he’s now too strong to fight…

So every year or so we have to schedule an appointment with a special needs dentist, and he/she would do the cleanings / xrays / fillings in a hospital setting under general anesthesia.

That’s right… tooth brushing was so difficult for our kid that instead of trying to brush his teeth everyday wifey and I decided that the concept of putting our kid under general anesthesia once a year was the less stressful move.

And that’s not to say that it’s not stressful.  This is one case where my son isn’t stressed out at all.  In the days and weeks leading up to the dentist hospital visit, he is fine…probably because he’s oblivious that it is coming up… but wifey and I are stressing and have to get ourselves in the right mental mindset for this appointment.

I have to take more time off of work.  And on the morning of, wifey and I are a barrel of nerves… but the king is pretty ok with it.

At the hospital they always try to give him a liquid sedative before the anesthesia and I tell them “he will spit that out… do you have a pill with some baby food instead?”  🙂

There was one time when he went in for his dental work.  It was around the same time that we were supposed to get that bone age xray test done… I think he was also overdue for some blood-work and was also overdue for an overnight EEG.

And once he was under the anesthesia and laying there peacefully I said to the doctors and nurses:

“While he’s under anesthesia can we also get the bone age xray done, and the blood-work done, maybe clip his nails, and give him a haircut too while he’s under?”

I was serious about the first two and somewhat kidding about the other two, but alas they couldn’t do anything else while he was under…

…and these doctors probably thought I was crazy for asking…  but that’s because most doctors don’t have a freaking clue!

That’s all I’ve got for now… I’m curious if you guys have similar issues with your kids and the doctors in your lives… maybe it’s more of a severe autism issue or a non verbal autism issue?

Looking forward to hearing your thoughts.



Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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25 People Replies to “What Doctors Don’t Get About Autism Parents”

  1. OMG! Reading your post and the comments is giving me PTSD. We have decided against various tests and procedures because there are no way our son will be able to sit through them. As he gets older(he's eight now), we are afraid its going to get worse. One bright spot is he doesn't mind an automatic toothbrush (yay, one victory). The biggest difficulty is communicating with doctors who can't wrap their super educated head around a non-verbal child. It takes longer and requires more investigation. I like that my son is getting older and we can do more things, but man, the doctor appointments are getting difficult.

  2. Anonymous

    Yep, totally know where you're coming from. Doctor's exams, dentist visit, clipping nails, being weighed on a scale, cutting hair … our son (who is 12) will not put up with any of it. I'm worrying about what to do when he starts needing to shave!!!

  3. Yes, yes, yes!!! Our trick is to bank up all the tests, blood work, dental etc., at the local children's hospital and have the different departments work together to schedule it together. Last year our daughter had Botox, dental,blood work, kidney scan, and ultra sound all done together for 5 different departments. We were at Boston Children's. But yes, I have tried so hard to educate her doctors about it. I crush up the meds with yoghurt for her. The biggest argument has been with the pharmacy to get them to order a different flavor in antibiotic liquids because she hates cherry.

  4. My son goes to Sick Kids Hospital for dental work. I told them he needed to be put under for work and they easily agreed, I didn't have to argue at all. They also were perfectly happy to draw his blood for tests while he was under. I am so happy to live in Toronto and be able to go to Sick Kids!

  5. Anonymous

    Two weeks in the hospital with a collapsed lung on an 18 year old ASD sweetie (an entire event in itself), I went from trying to explain nicely that he can't swallow pain pills ("he's old enough now and should be able"), to "Go right ahead and try it but it's not going to happen," to "WTF don't you get?! He's in terrible pain and I don't care that protocols say he is no longer able to receive IV or injected pain meds! Treat him humanely and give him the damn medicine without the extra torture and humiliation!" I just say, no one knows until you walk in their shoes for a bit. It's the duty of all who place themselves in jobs of service to listen to those receiving care and their families with respect and acknowledgement that they know much more about themselves or their family member.

  6. Oh, did I laugh at this post! I am lucky that my son is semi-ok to let me brush his teeth but has full blown meltdowns after we cut his nails. And it takes hubby and I to both hold him when doing this. Who knew a 6 year old could have super-human strength?? And yes – the Docs have no bloody clue. I have argued with many – this includes the special needs teachers. No one knows your kid better than you do. And I recently had to spend 45 minutes negotiating with a store manager to let me buy a red iron (yes, an iron – my son collects them and uses them as trains LOL) that my son wanted as it was a demo model and they'd lost the barcoding. They were very amused but I won! One red iron later – check LOL.

  7. My son has to be knocked out cold for dental work in the OR. He has had to have all his baby teeth pulled out as they rotted and caused cavities that made him scream in pain but he would not let them do general. That was when he was five. A little older and still he won't let them do general and we are at an autism specialist dentist. He was 12. She gave up and back we went to the OR to have his teeth cleaned and capped. Last year at 14 he had to go back to the OR to have his 4 top front teeth removed and three bottom front teeth removed at they were all brown, rotten and falling apart. He had such a traumatic experience he refused to go back for check ups and to have dentures fit. So for a year and a half he has had no front teeth. He needs implants before we lose his ins. at 18 so we are dreading what we will have to do to get them. If and when we go, we have agreed to get ALL his teeth pulled and implants put in. Only problem is they have to knock him out to pull the teeth, let that heal for a month, then knock him out to put the screws in and wait a month, then knock him out to fit the teeth in. Any cavities from now at 15 until 17 when he has to have this done we will have to have him knocked out and in the OR again. They can only do it at the hospital because we have medicaid and regular dental surgeons don't take it only the poor peoples hospital does. He has to take pills 4 times a day and at 15 we still need to remind him. If we are not home even with an alarm he just shuts it off and forgets. But thank God he takes pills. We use to have to crush them in a mortal and pestle and put them in carnation breakfast milk in a sippy cup, of which he might have gotten half the dose because of residue. He used sippy cups until he was 11!! He has finally gotten over the needle shots disasters where he would scream at the top of his lungs while on the table standing and cowering from the nurse screaming don't kill me over and over again until we could pin him with my husband on top and me holding his arm between my legs and the nurse trying to shoot him up. this year he was calm but grouchy but he sat still and just yelled after the shot for a minute. I have already taken up too much space here but I could go on and on. it is hard with a teenager as adults expect him to be mature. Developmentally he is still 8 but he is almost 6 foot and built with lots of muscles so physical force is so out of the scenario. He's wipe the floor with us. I have been doing this for 15 years and I see no end in sight. I love him more than my own life and I advocate for him and fight like a mama bear for him. But I am tired and we have done everything we can financially afford for him. The docs have no more ideas. His behavior is that of a petulant child having meltdowns and a teenager having puberty tantrums. Autism and puberty don't mix or play well together with my son. God bless us all!!!

  8. My 4 year old ASD boy once fell down on his head and got a deep cut. At the hospital they told us he will need stitches. Wifey and I told them to sedate him, but they decided to go ahead without it despite our pleadings. The most gruesome 15 minutes of my life. Wifey and I were holding him while the doctor stitched the wound. My boy kicked the doctor, my wife, and the table away. Wifey could not bear the sight and felt dizzy. So she had to be replaced with another nurse but the guy kept getting kicked. And so I had to hold him down all by myself. He kicked, pulled my hair and even tried to gnaw me. The stitching needle went kaput in the middle and we had to wait for about 2 minutes as the nurses scramble for a new one.

    After the stitching was done, he would not let the bandage over his head. We had to go to the hospital every 5-6 hours to get a fresh bandage on his head and the nurse wud give us a weird look.

    And dont even get me started on how stressed we get when it comes to anything related with needles.

    He also doesnt like to brush his teeth and so we are also thinking of gettinf a dentist appointment for him.

  9. My son goes to Sick Kids Hospital for dental work. I told them he needed to be put under for work and they easily agreed, I didn't have to argue at all. They also were perfectly happy to draw his blood for tests while he was under. I am so happy to live in Toronto and be able to go to Sick Kids!

  10. My son goes to Sick Kids Hospital for dental work. I told them he needed to be put under for work and they easily agreed, I didn't have to argue at all. They also were perfectly happy to draw his blood for tests while he was under. I am so happy to live in Toronto and be able to go to Sick Kids!

  11. So true. I have been avoiding blood tests for months because we have to take the twins (both with severe autism) to the children's hospital an hour away and they can't eat or drink anything but water before the tests. We can't book an appointment either so have to wait our turn. Neither will drink water. They both expect milk and arrowroot cookies right when they wake up and the thought of dealing with them for 2 hours in this state makes me too anxious to bother. We can't brush their teeth without them screaming and having complete melt downs so we rarely bother. Right now they are 5 so we can force it but that will change. They have a special needs kids room at the dentist where the door is closed and sound proof but we have to hold them down to have their teeth barely cleaned because they make it very difficult. Anyway you were dead on with your comments. We do the best we can although some will question our choices and decisions, they simply don't understand

  12. JoAnne V

    Vaccinations = both parents and two nurses who give him shot simultaneously in both arms. Blood draw – that only has happened once so far when he was two. It involved me in the chair holding him with 4 phlebotomists trying to get his body still enough to draw blood – ON A TWO YR OLD. Dentist, forget it. He has had one cleaning that was Mom and Dad holding legs, 3 hygienists holding his torso and arms and the poor dentist with the large metal clamps in his mouth to see his teeth. In the end he had to have dental surgery to fix his teeth. Don't ask how the coming out of anesthesia went. It was horrible. The nurses were afraid to let us leave. They thought he was having a violent reaction to the medicine. We finally just had to walk out of there holding a screaming, hitting, kicking, semi-conscious child. He has a cleaning in two weeks, he is going to be consciously sedated. I don't think it is going to help but we'll see. I am DREADING it.

    1. Anonymous

      Sounds horrible. The thought of holding a kid down for vaccines is sickening to me. Get a clue, please,for his sake.

  13. Anonymous

    �� I'm always happy to read your posts. Every thing you mentioned is true and it happens all the time my son is autistic but verbal, but we can't go to the dentist or get him a hair cut or even blood work or anything that requires a sit still. We tried a lot Everytime we get out we are both crying �� as hard as it sounds I was laughing while reading because it's the story of our lives.

  14. wow….it's like you read my mind! I have 3 yr old twins who are both on the spectrum, pretty severe and these damn Dr's really are clueless sometimes. I can barely get my kids to stand on a scale or even lay down on an exam table. My daughter had the croup at 2yrs old and the nurse tried to give her a nebulizer treatment….after she fought with the nurse for 20 minutes the dr c9ncluded she must have anger problems…at 2 yrs old with autism! I was dumbfounded and pretty much laughed it off…

  15. Anonymous

    Everything you said is so true. Our son is 25. We worked on the teeth thing for years. When you find a dr that understands you just want to hug him.

  16. Cassandra

    We put off blood work for 4 years with our ASD kiddo. He will take an IV and shots without a second thought. Will even watch the needles going into his arm. His problem is with blood draws. And not even with the needle. Just the drawing out of blood. He gets that it is a totally irrational fear he has, but there is no getting over it. He had to have surgery about a year ago (he was 17) and we had them do a draw, while he was under general anesthesia, so they could run every test imaginable.

    1. My son has SPD with ADHD and it takes 3-4 of us to hold him down for shots. The dentist visits have gotten better (he sees a dentist with experience in special needs) but used to be awful. Can't easily do x-rays or MRI's without extensive planning (he has to be put out).

    2. Cassandra

      Nope. It's not actually the needle he has a problem with and he has great veins (unlike his mama who tells techs that if they can't hit my vein the first time with a butterfly needle they need to find somebody who can). It's the blood leaving his body that totally freaks him out.

    3. If they use a butterfly needle and the long thin flexible tube thing so he doesn't see the blood coming out would that help? That's how Sick Kids Hospital does it.

  17. When my daughter was in elementary school, she managed to give herself a concussion at school every year. Meltdowns, mostly. One time, they wanted to do a CT scan. We were there over 10 hours. She spat out the liquid medicine. In the Doctor's eyes. Some probably went down, but not enough. She wouldn't swallow a pill. The injection HAD NO EFFECT. So they decided they had to do it via IV. By this time, I was just sitting there, going, "you try whatever you like, but you'll need a lot of people to hold her down for that." This was a small for her age 6 year old. Four big strong men to hold her down for the IV to be placed, and two to place it. And they taped her arm to a board and strapped her into a papoose board thingy. And even with enough sedative in her to make an adult sleep for days, she managed to get her other arm free, and kept plucking at the IV line, muttering "get this out of me".

    Shots? She's terrified of needles. She's also allergic to penicillin, zithromax and rocephin – the go to antibiotics for pneumonia. That was how we found out she was allergic. Reactions to all three. So it's kind of important she gets a flu shot. She's about 10 years old at the time this happened. She's freaking out because the idiot nurse guy is telling her to quit being so manipulative, shut up and let him give the injection. WTF. He told me that since he had six disabled kids at home, that gave him the right to tell mine to behave. Needless to say, we walked out and never let him near her again. And I might have told him that six kids didn't give him any rights, it just meant he didn't know when to keep his pants on. The nice nurse in the clinic gave them to her, and followed my lead. "She's going to plead, and holler and tell you she's not ready yet, but she'll never be ready. I'll hold her, and give me a nod when you're all set, and I'll pin her arms and you go." Worked like a charm, over before she could react. For the last few years, an extremely kind gentle man has given all her vaccines. He GETS her. He pulls us out of line, and takes us as soon as he knows we're there, so she doesn't sit and worry. He sits for a moment and quietly talks to her, tells her what he's going to do, and she asks if she can tell him when, and he says she can count down. And he usually gives it on two, not three, but she doesn't notice. And after, he tells her "thank you for trusting me". And I almost cry every time, because he treats her like a person and it's made all the difference.

  18. Frances

    You are spot on, and it's not just a nonverbal thing. Last year we were in the ER, and the doctor wanted to give my son an IV. I said, "He needs to be sedated first." Suddenly the doctor figured out a way to avoid the IV. We always have to have the conversation with every single doctor about how we already tried x, y and z and none of them worked. We always wait until we have lab requisitions from a couple of doctors before we even attempt a blood test.

  19. This captures so many of the problems in trying to help our kids. Years ago, my son broke his elbow. We lived in a rural area and it was 60 miles to the nearest hospital. First, before he would calm down, the paramedics had to put a bandaid on his elbow after they splinted it, because that's what you do for an owie. I had to ride in the ambulance with him and hold his hand the entire way so he wouldn't panic. The ambulance crew and paramedics were great and they worked with us.

    When we got there, he was out of it because of the pain, so it wasn't too much of a problem for them to set his arm. Since it was his elbow, they had to open it up and they put him under. They put on a temporary cast, then they told us to come back in a week so they could put on a permanent one. I told the doctor that he needed to be put under, my husband repeated this and he nodded and said sure.

    Next week, we come in, ask how they are going to sedate him, they say, we don't need to do that. My husband and I look at each other and try to explain that our child needs to be sedate. They tell us they aren't equipped to do that in the office and there shouldn't be a problem. We were new to this and reluctantly agreed. It took my husband, myself and a nurse to hold him down, a 5 year old, in order for them to take the cast off and put a new one. While holding him down, he was still struggling and squeezing his arm as he tried to get away.

    After the doctor was done, he looked worried and takes an x-ray. During the struggles, my son had popped the bone out somewhat, so we had to come back the next week to see if it was still knitting together properly. Next week, the bone was not knitting together right, so the doctor would need to go back in, rebreak it and reset.

    Another week goes by, we come back to the hospital, bright and early, ready to get this started. However, no doctor, he is busy with an emergency case. The nurses say come on in, you can all sit in room and wait. Or we could drop him off and come back to get him later, the nurses would watch him. My husband and I again share a look and say, nope, we will drive around and check back in. We did this, with a very hungry, unhappy, child, since he wasn't supposed to eat. But it was better than sitting in a small room, trying to keep him contained. Or come back later to find out what the nurses had to do to keep him contained. Since this was before cell phones, they wouldn't have been able to contact us.

    So for the next eight hours, once an hour, we could check in, nope, no doctor, back out we would go. We bless the anesthesiologist, he came out to our van, explained what he would need to do and said he would give our son something before he went into the OR so he wouldn't panic. I still remember him scrunching in our van and doing his best to make all of us comfortable. We went in, my husband carried my son and the anesthesiologist gave him a quick shot and he went limp. My husband handed him over, got the arm reset without any additional issues and we finally went home.

    At least six weeks later, when they had to take the cast off, they understood he needed to be sedated. Since removing a cast can involve saws and lots of noise, my husband and I were very happy that they finally saw things our way. This was over 20 years ago, I would hope that some things would have changed for the better.