Do you like going to the dentist? If we’re honest, many of us will say no, but we go anyway because we know it is important for our oral health. Having instruments poked in your mouth and a bright light in your eyes is not very comfortable, but we know that prevention is better than cure. And a lot cheaper. For most families regular check ups are just part of the normal routine, but for a child with oral sensory issues, it can be a challenging and stressful undertaking. Yesterday I took Dan to the dentist for a check and it actually went quite well, but it has taken a lot of persistence and patience to achieve.
Autism comes with a number of challenges and one of those is sensory issues. Dan has oral sensitivity so anything associated with the mouth presents extra challenges. For years teeth cleaning has been a battle between Dan, me and the toothbrush. While I’m trying to get the toothbrush in, Dan is trying to get it out. In the early years we didn’t know Dan had autism, so we didn’t know what was going on and why teeth cleaning was such a trial. Later on, when Dan had been diagnosed, dentists recommended using an electric toothbrush and it did help because it gave a better clean in a quicker time. Anything for a shorter battle!
Patience and Understanding
Since Dan doesn’t even like having the toothbrush in his mouth, then getting dental tools like a mirror or probe in there, is even more of a battle. Treating a patient with autism means you need to have a very patient and understanding dentist. You can’t just go to anybody. We have been fortunate over the years to have had pretty understanding dentists, but when we moved to Toowoomba there were so many to choose from. How do you find a patient and understanding dentist? I had to spend quite some time researching. One essential requirement was the ability to have dental work completed under a General Anaesthetic (GA). Considering the challenge in just getting the check up done, there is absolutely no way you would ever be able to get any work done in the chair. I used to get really annoyed with those dental vouchers the government would send us for our children. They were absolutely useless to us because you couldn’t use them for any work done in a hospital. It discriminated against any family who has children with special needs. So over the years Dan has had a number of GAs for dental work.
As luck would have it, the dental surgery we tried has been excellent and our persistence over the years has paid off. Dan has slowly got used to the dentist, and has learned to tolerate the mirror in his mouth as long as the dentist doesn’t mind Dan “helping” them with the mirror. Dan likes to hold the dentist’s hand when they are using the mirror. I think it’s so he can have some degree of control over where that thing is going in his mouth. At least Dan no longer bites the mirror.
We have also been doing a lot of work with the Occupational Therapist (OT) on improving Dan’s teeth cleaning. Dentists always understood we did the best we could, under the circumstances, but increased access to Occupational Therapy has meant we can focus on some of these daily life skills that have been ignored over the years. I think this has been one of the clearest benefits of the NDIS. Before NDIS we had such limited access to therapy, that speech and communication were always the focus. But now with extended and continual access to therapy, a lot more life skills can be addressed. For so long, life skills that we take for granted have been neglected for many people with disabilities. It takes a long time, therefore, to teach, learn and practise new skills, but in the long run it will lead to greater independence and quality of life. For a lot of people with disabilities, we are playing catch up here – catching up on all the skills they never had an opportunity to develop. So it is essential that we fight any attempt to reduce the amount of individual funding participants receive. After years of neglect – they need it.
Now cleaning your teeth seems like a pretty straightforward thing but with Dan it is a task that has to be broken down into many small steps. We have always had a problem with Dan swallowing the tooth paste, so the OT has spent a lot of time teaching Dan how to spit water, how to hold the water in his mouth and then spit, slowing building up to the point when Dan could keep the toothpaste in his mouth without wanting to get rid of it straight away. You wouldn’t think it would be such a complicated process. We even have an illustrated chart so all the support workers know how to guide Dan in cleaning his teeth. But the work has been paying off, because on our recent check up Dan came away with a clean bill of oral health. No need for a GA this time. Yay!
You know, it doesn’t matter how long you have been dealing with autism, there is always something new to learn. We didn’t realise until just recently that Dan’s oral sensitivity also impacts his eating. We had long figured out that he didn’t like certain textures of food so we avoided them. And Dan has always required some supervision when eating because he will try to swallow food without chewing properly or eat things he’s not supposed to like the watermelon rind. We would just always say, “chew and swallow,” “one mouthful at a time,” and “finished” when he got down to the rind.
Dan’s oral sensitivity has been with him since birth. We didn’t know it at the time because he wasn’t diagnosed with autism until the was three, but he was always a poor feeder when he was a baby. I eventually just had to bottle feed him. We didn’t learn until much later that it was due to underdeveloped muscles in the mouth and jaw. It is why he also has difficulty with speech. With lots of practise some words have become clearer, but many words are quite unclear or he abbreviates them, leaving middle sounds out of multi-syllable words. The low muscle tone and lack of strength in the jaw muscles also affect his chewing and swallowing. So now we have new recommendations for his diet that we have to come to terms with. It’s a never ending journey with Dan, but we wouldn’t have it any other way.
Life is never dull on the spectrum.