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13 Comments Posted on February 21, 2014April 24, 2017 Autism, Patient Talk

Autism and Challenging Behaviour Part Six. A trip to the dentist and brushing those teeth.

Dentists and Autism

When I was young any mention of a visit to the dentist would create a shiver of horror and fear right across the school yard.

In fact, in my case, there was not a whole bunch to worry about in dental terms. But for a child with autism this may not be the case.

Having talked to a lot of parents of children with autism I believe dental care may be more than a bit of a worry. Firstly there is the task of brushing teeth and then there is the sensory overload of a tip to the dentist itself. The aim of this blog is to give parents and people with ASD the opportunity to share their tips for great dental hygiene.

In the case of our seven year old we have eventually found some solutions but, I have to say, with plenty of hiccups along the way.

In fact cleaning teeth is actually helped by his ASD. One of his sensory “pressure points” is at the back of his mouth along the gums. So in fact the act of his cleaning his teeth is not a problem at all. He rather enjoys it. What did prove to be a problem was getting him to remember to clean his teeth. What my wife has done is so simple I have to describe it as an act of genius. Each evening she and John play a game just before going to bed. The game? Cleaning your teeth. In fact he now reminds us it is time to play “cleaning your teeth”. There is a song to go with it but I’ll not share it for reasons of aesthetics.

Visits to the dentist on the other hand have proved harder. But we got lucky. In a conversation with the local Early Years Centre (who provided a lot of the initial support including PECS training) it was mentioned that one of the local NHS Health Centres has a specialist autism clinic once a week. (I should mention that for reasons totally unknown to me they do not publicise the clinic.)

Actually the practice is not that different from other dentists. Where it does vary is that a lot of the children’s posters are removed from the walls. Also the staff have been training in behaviours associated with ASD and know how to help in case of meltdown or over stimulation. But their real trick is to give plenty of time for John to get used to the surgery. In fact on his first visit they did not look at his teeth. Rather they let him play with the safer instruments and go up and down on the chair. By the end of 30 minutes he was very keen to come back and play some more.

Since then he has had to have a couple of interventions. Both have gone without issue as he has a social story to look at and the procedure is clearly explained in bit sized chunks and carried out at a speed that meets his need.

And the overall outcome? His latest ambition is to become a dentist. Not just a dentist but the first dentist on Mars!

So my real advice to other parents looking for a suitable dentist. Is google for autism specialist. They do exist and they are very good.

But over to you. It would be great if you could use the comments box below to share how you deal with your child’s dental health. Perhaps you might like to consider some of the following questions:-

a) Do you have any concerns and challenges with your children dental health and visits to a dentist?

b) How did you establish a teeth cleaning routine?

c) What is a typical trip to a dentist like for you?

d) Do you use a specialist dentist?

e) What advice would you give to another parent of a child with autism who has similar issues?

I really look forward to reading your responses.

Many thanks in advance.

NikkiZumbachHarken	I actually am working with a Dentist in creating a ‘plan’ to use for ANY ASD children visiting the dentist (including sensory advice, social stories, and gradual appointments) Would LOVE to share what we are doing. If you are interested in being a part of what we are doing please email me nicholekea@gmail.com
Tami Kaye	Every morning is a struggle and an argument with my 11 year old son to brush his teeth. I always find it odd because I try to enforce routine and schedule because that is so important. It just seems like after getting up for school for the last 6 years, that routine would have became a natural thing to do. I understand that it is a sensory issue but such a simple thing can disrupt an entire morning for the family. I try not to let it become a power struggle!! I do not want a toothache in that sensory mouth. Been there and done that. We have been pretty lucky with dentists appointments. The exams go well and the results are usually good as well. a few years ago he did have a cavity and a toothache. It was terrible 🙁 I try to use that as a reminder to why it is sooo important to brush. I would love to hear any suggestions or ideas. HELP 🙂
SarahFlores	Yes, I finally broke down and called a pediatric dentist in wichita, we have a consultation schedule for June, it’s 3hrs away from us but in talking to them and looking on their website I think this is going to be the best way to go 🙂
MaryHayden	SarahFlores Have you tried an incentive or reward? My son, almost 8 now, has a hard time with the dentist. He chooses a reward before hand, something reasonable. He gets that reward if he does well and cooperates for the dentist. I find that a reward system works for my son with most things but the dentist is still a challenge. He also has to know what to expect so we talk about it at least a few days before we go. He usually does a lot better when he knows what’s coming. We use a pediatric dentist, they are good with him. I don’t know if we have any dental programs for ASD or special needs kids in my area.
AmberWilder	My 3 year old son use to hate brushing & flossing his teeth but I kept at it and now he tolerates it but still hates going to the dentist lol.. I started out with him on the ground with his arms under my legs, his head between my thighs and have bite on the end if a toddler toothbrush while I brushed his teeth with a different toothbrush.. He hated it at first but I knew I had to keep at it and eventually he didn’t mind it as much so now I’m able to floss his teeth with little floss picks. When I started flossing I also had him bite on the end of a toddler toothbrush. Now I’m able to floss and brush without having him bite on the end if a toothbrush ( the dentist has a biter stick that helps too). It’s definitely hard at first but once you desensitize them it gets easier. He just had his 2nd visit to the dentist and that was a lot if work but I’m hoping if I keep at it that it will get easier 🙂
Choirgirl64	luciecc One thing that works for my son is instead of using the mirror to open and examine, he uses a toothbrush. My son is used to opening for the toothbrush and enjoys the sensation, so actually will open very wide for the dentist to have a look. He won’t let a metal mirror in at all. Perhaps they should invent a plastic toothbrush looking mirror. When he needs work, even a cleaning, he is put under anaesthetic at the hospital. That has always gone very well. We’ve had three of these. He’s 19 now.
Ymkje Wideman	First Visit to the Dentist I approached my grandson’s first visit to the dentist with some trepidation. When he was little, his Sensory Processing Disorder (SPD) made brushing his teeth a daily challenge. Still, with persistence, and experimenting with the brush and toothpaste he liked best, we had settled into a good routine. He would gingerly “brush” a little bit, and I would finish by standing behind him, holding his chin with one hand, and gentle brushing until all his teeth were clean and free from “sugar bugs”. He only tolerated very little toothpaste on his brush, which I’d rub into the bristles with my finger, so he’d hardly see it, because if the gel or paste was atop the bristles he always protested—and he still does. It must be something about the texture or taste that makes it hard for him to handle. I knew his first check-up would include the hygienist brushing his teeth and applying fluoride, so I was concerned it wouldn’t turn into a scene. I researched a bit and found Autism Speaks’ very helpful Dental Tool Kit. You can find and download it here: http://www.autismspeaks.org/family-services/tool-kits/dental-tool-kit. I called several local dentists before I settled on one who understood and was willing to accommodate my special requests for my grandson’s visit. I emailed and sent information about autism and his needs ahead of our visit, which they read and acknowledged. Just after we arranged the appointment, we happened to visit the local Children’s Museum, which included a “dentist office” with a real chair that went up and down, an X-ray apron, and some of the “tools” a dentist uses. It was perfect visual preparation for his upcoming appointment. I also prepared at home by writing a picture story for Logan, which we went over repeatedly, and which he carried with him to refer to during his check up. The staff was so accommodating, and they really took their time to reassure him and make sure he was comfortable with everything they were going to do during the check up. I’d asked if I could bring his own toothpaste, which they said was fine, and they were careful to show him that they’d just used a little bit. It took a little longer than a regular trip to the dentist might take, but all the preparation paid off, and his first visit was nothing but a pleasant experience for him, paving the way for future successful visits.
SarahFlores	any advice would be great I have to threaten grounding to get him to cooperate for his cleanings and sometimes that doesn’t even work, he is atypical autistic in the grey area between autistic and aspergers, so what works for either side doesn’t necessarily work for him 🙁 next visit they want to do sealants since he turned 8 this year. so looks like I’m in search of a new dentist, it was suggested that I take him to a pediatric dentist….any ideas? he loves brushing his teeth and always reminds me if I forget

DJBlytheII	The first time I took Kaylin to a dentist it was a nightmare. As a single dad, I am usually accused of abusing her after someone sees her meltdown. This is what happened at her first dentist appointment. The dentist pulled me aside and interogated me as if I had been mistreating her. I get this a lot but i never get used to it. Now, I have found a dentist that treats many ASD, SPD, ODD kids and they are awesome! Kaylin just underwent oral surgery and did great. If your in the Denver area, check out Ridgeview Pediatric dentistry at The Orchards shopping center Westminster, CO. Not only did they take good care of my lil girl but they didnt treat me like a bad dad!

3 Comments Posted on February 20, 2014March 2, 2017 Autism, Patient Talk

Autism! What natural, complementary and alternative techniques have you used as therapies for autism? Please take our poll!

Our son who has autism

One of the very interesting things about running a Facebook page like AutismTalk (https://www.facebook.com/AutismTalk) is the sheer variety of topics our readers wish to discuss on all matters relating to ASD.

One area, however, which comes up on a very frequent basis is that of natural therapies for autism.

As a parent of a 7 year old with autism this is obviously of great interest to my wife and me.

So we were wondering if you would take part in the poll below telling us a bit more about the various natural therapies for autism you have used. Even more useful would it be possible to share a bit more about these therapies in the comments box. Inparticular how successful or otherwise those natural ASD therapies have been.

Thanks very much – my wife and I really appreciate you help!

5 Comments Posted on February 19, 2014April 25, 2017 Autism, Patient Talk

Autism – at what age were you or your loved one diagnosed as being on the autism spectrum? Please take our poll!

Autism Awareness

When I first started to write about autism on this blog a year or so ago my first post looked at the our son’s diagnosis with Autism Spectrum Disorder (ASD) about seven weeks before his third birthday. You can read the blog here – https://patienttalk.org/how-easy-was-it-to-get-your-child-diagnosed-with-autism/ – it would be really great if you could have a look and maybe share your autism diagnosis story. This will really help others going through an autism diagnostic process!

One of the things that has always interested me is at what age people get diagnosed with different types of autism such as Aspergers, PDD-NOS or in our case of our son classic autism. In fact one of my wife’s cousins started her son’s autistic diagnosis when she saw the first symptom at around 10 months. Constipation interestly enough!

So I though a poll would be handy to give us all an opportunity to pool our knowledge. So please feel free to vote below. If you want to share anything more please use the comments box below to add your thoughts.

Thanks very much in advance!

RinkjevanderWeij	I was diagnosed at age 12 with ADHD and at age 24 with higher functioning autism. I’ve had problems fitting in to the world my whole life but my diagnosis has made it easier for me. You could say my life began anew with the diagnosis, because people understand better why I do things the way I do or why I react in a different way.
irlam7	Watching casualty tonight and they tell parents that there son might be on the autistic spectrum and they break down. From my experience of having a child on this spectrum, I must say through all the ups and downs of my experience with my boy it’s been a pleasure. I have a daughter who is on the doesn’t do what she’s told and knows better than anyone spectrum and wouldn’t swap any of them for the world. I would like to say I am a proud father of a boy with aspergers.
diamz	i live in Laredo tx and was wondering where can i take my son to be diagnosed or re evaluated , my son is 9 yrs old and was diagnosed with ADHD at the age of 4 but we have been having lots of problems with him at home and need help , not sure where to look can anyone pls help us out .. Thanks Diana..
terri fleming	my son was diagnoised at age 11. After years of being told we had just babied him too much, he was the baby in a family of 4,hes lazy. all things I was told. Just read to him over and over like that was all he needed. I learned to respect my mom voice. I knew my child was smart, and I also knew “something ” was different about this little boy. We’ve come along way, home schooling now, hoping to return to a different school next fall. I have learned so much from watching this little guy learn how to live in this noisy, fast paced world. he is so forgiving and loving even when other children are just down right mean to him. If as a parent you sense something about your child and your not getting the answers or help from their school or DR. keep looking! Your child needs you to fight for them, they don’t have a voice unless you speak for them.
mikalena	My son was diagnosed with autism at 3 then he had a MRI which diagnosed him with multiple Brain lessions he has difficulty with his balance he falls easily when running cant climb without falling and is being fitted for a wheelchair Please is anyone out experiencing this I’m so lost and scares of the next steps

8 Comments Posted on February 18, 2014October 9, 2017 Autism

Autism! Should Asperger’s Syndrome have a separate diagnosis from other Autistic Spectrum Conditions?

Autism Acceptance

When our son was being diagnosed with Autistic Spectrum Condition (ASC) nearly seven years ago now; one of the points of discussion with various healthcare professionals was the terms of reference of the diagnosis.

By that I mean what sort of label would our son be given. Aspergers, autism or the then unknown to us Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS) were all explained to us. But we were told that we would not be given an Aspergers diagnosis. Why we asked? The answer was simple. The local council say Aspergers as “not a problem” and this would not fund and treatments or early interventions. Therefore the local healthcare professional always diagnosed with the label ASD. In fact our son has classic autism so no problem there.

At the same time in America a different process but with a similar outcome was underway. In fact this was the removal of Aspergers as a diagnostic category in and of itself. You can read us more about it here http://www.livescience.com/37333-dsm-aspergers-disorder.html.

At the time there was some sharp discussion about the issue within the autism community but quantitative opinions seemed to have been ignored. So we though it would be useful to run a poll trying to see if there is a consensus view from the autism community.

We would be very grateful if you could take part in the poll below. Please use the comments box to share your view and reasons behind it in more detail.

Many thanks in advance!

YvonneScott1	I am undiagnosed , but having gotten to the age of 64 please believe me I know I have asperges . I have struggled all my life trying to copy other people’s responses . Since turning 60 I seem to have come to the conclusion I am just who i am and I’m now comfortable with being “different” however I think if I could officially identify myself as having asperges it would make me more comfortable.
JaneRitchie	I have 2 sons, my 8 year old has a diagnosis of high functioning autism, where my 6 year olds diagnosis states he is on the autistic spectrum with aspergers. Both are very different children with very different support needs, so I am grateful their bits of paper state they are in different bubbles.
sneedley13	I agree that there should be a general heading, but I do think each ‘area’ should have its own diagnosis, especially when it becomes obvious which way the child is tending. My son was diagnosed ASD, but when he was assessed by CAHMS, they told us that he had markers for Asperger’s, Autism and Dyspraxia, as well as being mildly Dyslexic. We were told that because there were more markers for Autism than any other ‘area’ that is the diagnosis they would give although we were given info about Asperger’s and Dyspraxia too. I think the biggest problem is that, while we can all compare behaviours/traits/issues, no two ASD children are the same, which make diagnosis and therapies all the more challenging. We have found that we just try what we think might work, and if it doesn’t, we try again. We are very lucky that Connor has an excellent TA at school. @everything I really feel for you, and shed a little tear when I read your post (and please don’t take this as condescension, I can assure you it is not!) I cannot imagine what your day-to-day life must be like, and I can completely understand your frustration around us complaining about things that must seem almost trivial to you. But please do NOT apologise for ranting, that is exactly what these kind of support groups/sites are for! Stay strong, and God bless
faithfuldad	I think there can be a general heading, yes, but each subject should have its own separate and distinct diagnosis. ‘Specialists’ have had difficulty assessing our son and have given him different assessments over a period of 5 years. The only agreement btw their assessments being that he had learning challenges. A lot more attention should be paid to deeper research in this area and we are keen on being a part of it. Our hearts and hands go out to all parents and children faced with this challenge. We hope that all will go through this with faith, commitment, encouragement and especially positive results for both children and parents.
CathandLogan	In reply to momof2asdkids.Unfortunately there are alot of aspie children who have an asd diagnosis just because they can get better funding that way. If the doctors are going to have to abide by the rules around diagnosing then I think it is a good idea. And sorry to say @mumof2asdkids but it would be very likely that your child would be put into hf asd or aspie group. and alot of parents will resent this too. My son is mid range asd. Non verbal and only will be able to attend a special school, with little expectation to achieve. I too have to wonder what will happen to him when I am not here to look after him and he too will need someone to care for him for the rest of his life. Those with kids at school have no idea how lucky they really are and really have no way of understanding what it is like to have a fully disabled child.
momof2asdkids	In reply to everything.everything I Agree, there needs to be a separate diagnosis for each. My ASD child doesn’t have classical or severe autism, but he does have moderate ASD and because the school system can’t “see” his disability, they are choosing to pretend like it doesn’t exist. He stims in class, he is clearly different than the other children, you can’t understand him when he speaks and he does more screaming than speaking, but because he can memorize letters/numbers/words/flash cards they want to slap a Aspie label on him and he just isnt’ there. I would love for them to have a separate HFA/Aspergers diagnosis just so we can bring his ASD diagnosis to the school and tell them “look, he’s not HFA/Aspie, so you need to help him and not tell us to wait it out”.
tjnel	In reply to everything.everything I totally agree. My son has what they call mild to moderate ASD, but I don’t see him as having autism or being autistic. It’s confusing for people who aren’t in this world, as soon as they hear the word Autism they think ‘Rainman’. Yes our son has issues with coping, but it’s manageable for us. Most of the time we can reason with him. I have never had to clean poop off the walls. What my son has, and what your daughter has, I believe, maybe on the same spectrum, but it’s not necessary to put them in the same box. Why they have to change things just when they are being recognised is beyond me. I view Autism as being a bit harder to deal with than what we have to deal with. We got lucky. I guess it’s a convenience for the medical profession to put all these labels under the same umbrella.
everything	I don’t want to undermine the struggles aspie go through. I know it’s important for them to get therapy and that’s why they classified it this way so there’s a nice check box next to the dr forms so they can get help as much as “regular” ASD kids. HOWEVER, I do not relate to HF autism or asperger’s kids. This is not my world. it is super frustrating to go into threads where they are so up in arms that the majority of ASD kids were labeled mentally retarded and they were offended. Well, before aspies were grouped in yes.. 70% had that label and it’s not awful it just is and we work through it and use our therapies. Or they get offended that people want to cure autism or this or that… they just don’t GET what it’s like to have a LF/severe/ classical autism kid and that is super frustrating. So yes, I would VERY much like to not be grouped together. When I go to a forum for support it’s usually HF people who don’t get anything I am going through and it is beyond frustrating! My life isn’t about quirkiness or even not enoughfriends at school, or being too smart, or not socializing.. my life is cleaning poop off the walls.. wonder how I am going to deal with a period in a diaper when she turned 12. Knowing she most likely won’t ever speak, use an ap to speak, point, marry have kids be toilet trained.. ever know that I am her mom. I wonder if she will every be able to use a spoon or drink without choking every day and when I have those concerns people just say optimistically give it time. Those people don’t get it either. You can see your future at a certain point and it’s fine but don’t belittle the situation. It’s hard! I pray my kid becomes and aspie but probably won’t. She will have the mentally retarded label and the severe label and the non verbal label and that’s our life. We just don’t relate at all to doesn’t have enough best friends. My kid could care less about friends. Wouldn’t be able to learn their names anyway. I am having huge issues with this lately so hence the rant. Sorry but it’s true.

Leave a comment Posted on February 17, 2014March 13, 2014 Autism, Patient Talk

We Rock The Spectrum Kids Gym – Gail Field, a mom of PDD-NOS child, tells her amazing story!

We Rock The Spectrum Kids Gym Boca Raton

Welcome to the latest in our series of guest post about autism. Today Gail Field shares her inspiring story. While many autistic parents look for suitable activities for their children Field went one further and set up a gym as part of a franchise called “We Rock The Spectrum Kids Gym”.

The picture illustrating this blog is her flyer. Please click to enlarge.

Field’s web site can be found at http://www.werockthespectrumbocaraton.com/.

Ms Field shares “My name is Gail Field and when you look at me you would assume that I am a typical Suburban wife, and mother to three beautiful children. However, my life is not typical at all! I have been a West Boca Raton resident for fourteen years raising two children who are now sixteen and eighteen years of age. While raising my children I was on the Parent Teachers Association for 5 years at Waters Edge Elementary, and have been involved with the sports community as well. Four years ago I was blessed with a surprise Pregnancy and had a baby boy at the age of 40, being an older mom made me worry, as most woman would do, yet we embraced what lyed ahead. When my son was six months old I started questioning what and why things he wasn’t doing or was doing, he wasn’t reaching certain milestones that are typical at certain ages. People said I was just being neurotic and the pediatricians kept telling me that there was no cause for concern. Every time I went to the doctor’s office I voiced my opinions with heart-wrenching questions, I knew in my head and my heart something was seriously wrong with my beautiful baby boy. I would lay in my bed and cry because I watched my son deteriorate in front of my eyes. Long story short, my son Jayson was diagnosed at eighteen months with PDD a form of autism. It has been quite a journey the past couple of years, while learning and growing every day, Jayson participates in several different types of therapy, as early intervention can be extremely beneficial to these children who are diagnosed with disorders such as PDD.

One rainy day I wanted to take him somewhere fun, somewhere that wasn’t your typical Monkey Joe’s / Chuckee Cheese, some place where I didn’t have to say I am sorry every five minutes because Jayson was a little different, or not up to par with the other kids, where we felt welcome. With this constant scenario I started googling and couldn’t find anything in South Florida to accommodate my child or any other child with disorders such as this. It disheartened me so I went further and found a place in California. I went on the website and read about We Rock The Spectrum Kids Gym for all Kids and thought what an amazing place this is, there motto is A PLACE WHERE YOU NEVER HAVE TO SAY SORRY!!!. My life has centered around my son knowingfully well that I would have be the one to find and seek opportunities to safeguard his future. Every mother of a toddler is tired yet I knew that I could never sit back and accept what limited resources there were. Many phone calls, emails, and texts ensued to WRTS in California. I met an amazing woman named Dian Kimmel, the founder/ owner of WRTS California….after several conversations we decided to bring the gym to Boca Raton, and as of December 26th I bought the franchise. I am not a wealthy woman and we are just a normal family living pay check to paycheck. Deep in my heart, I believe this is what I am suppose to be doing. WRTS/Boca Raton will not just benefit my son Jayson, but all of the children in the South Florida area and for that I am forever grateful!!”