Underdiagnosed Problems That Parents Should Know About

My son is 18 and has severe autism. Since his regression just before his second birthday we’ve seen six speech language pathologists, four dentists and one ENT doctor. I raised the issue of either breathing or articulation problems with all of these people.

When I shared my concerns with the ENT about my son mouth breathing, I was told ‘he’s getting enough oxygen’ so I shouldn’t worry. The ENT didn’t want to perform an examination even though an ENT should fully comprehend the negative health outcomes of mouth breathing and that breathing is far, far more than just having enough oxygen to exist. I forced the issue, there was an examination and I was told my son was fine. I found it difficult to trust that diagnosis based on the dismissive words and attitude.

Two years ago, still having concerns, I asked our biological dentist (that we had been seeing for six years) if my son could possibly have a tongue tie. I hadn’t thought it was likely because my son had breastfed quite well—I now realize that since he was my third child I was able to compensate for his struggles—but mostly because I did not believe that such a problem could be overlooked by so many people.

The dentist’s response? ‘Even if he did, we wouldn’t treat it because he doesn’t speak.’

First of all, that’s not true. He does say words, hundreds of them, and why wouldn’t we want to make that easier for him even if that was the only issue at hand.

But let’s say he didn’t speak and somehow the dentist could see into the future and know he never would; why would a health care professional who performs frenectomies (tongue tie release procedures) not understand the much wider health implications of untreated tongue tie?

Shortly after our former dentist dismissed my question about possible tongue tie, covid hit. During that time, I found a local myofunctional therapist who is also a dentist. At that appointment a careful assessment was done and we found out that my son has a severe tongue tie. Because it has gone so long untreated, damage has been done.

My son is going to need at least two years of orthodontics, very likely more, before we can even consider fixing his tongue tie. His palate needs to be changed to make room for proper placement of his tongue. Only then will we be able to start myofunctional therapy in a productive way.

The orthodontics will be very difficult for him, suffering that he will have to endure without even the comfort of being able to express to us how much pain he might be in. It will cost us a great deal of money we don’t have. All of this, including his 16 years of poor sleep, increasing levels of mouth breathing and many other health struggles, at least in part the result of so many health professionals failing to be careful enough. I’m not even sure why I’m using the word professionals – it doesn’t seem accurate.

I am devastated. Not only in regard to what I now know about his undiagnosed and untreated tongue tie and the consequent health issues but also devastated by the fact that health care specialists have let my son down relentlessly in so many ways. This is just the most recent.

At the same time, I also feel crushing guilt that I’ve let him down as well. I know people, especially people with children, will likely disagree. I know, objectively, that parents cannot reasonably be expected to have specialist-level knowledge in all areas of health. But the guilt is always there.

Proper breathing is crucial to good health. Tongue tie, lip tie, mouth breathing, bed-wetting, ADD or ADHD, gum problems including chronic inflammation, crowded teeth, high narrow palate, allergies, immune system issues, anxiety, aggression, poor sleep—all of these can be causes and/or consequences of improper breathing and are often interconnected problems that can be relieved with appropriate treatments.

As with all health problems, the earlier proper treatment or intervention can begin, the better. I urge parents of children with autism and/or ADHD regardless of their age, to spend a few minutes looking into this topic.

Below are some resources I have found helpful but there is quite a bit of information elsewhere available on the internet which may be more specifically relevant to your circumstances.

https://open.spotify.com/episode/0oS1iL1WreXITmXSJzdEIY?si=7fc787874dd847de&nd=1 An interview between Dr. Derek Mahony, a renowned orthodontist, and Sarah Hornsby, a myofunctional therapist, that covers many introductory issues regarding mouth breathing, tongue tie, sleep problems possible interventions and solutions.

https://myfaceology.com/ Sarah Hornsby’s website.

http://www.advancecentres.com/ We are also currently pursuing The Scotson Technique, a gentle massage that we hope will help my son breathe more properly, using his diaphragm.

https://www.buteykobreathing.org/ We have also started learning Buteyko breathing exercises. Again, our hope is that these techniques will help our son learn to breathe properly, through his nose, using his diaphragm.