Rett Syndrome and ADHD – 10:11am Wednesday 2nd July 2025

Rett Syndrome and ADHD – 10:11am Wednesday 2nd July 2025

An article yesterday, which I didn’t fully read but the gist was in reference to the onset of halting speech in older people being an indication of possible illnesses, like dementia and conditions of that type.

I agree that someone who formerly spoke in a fluent, fluid way and then began to have difficulty finding their words etcetera,  whose speech began to halt and falter excessively, would be an issue to promptly investigate.

In my case however, this has been an issue all my life and I speak the best I’ve ever spoken nowadays. On occasion, I can get my words out almost as well as anyone else and when I do it’s a very nice feeling, but it’s rare, mostly I have to deal with delays, finding the word can take you (me) away from the subject and then once I’ve searched and found the word, I’ve then got to recall what I was referring to. 

I couldn’t speak all day, so when I do speak, it’s generally of importance (to me). Hopefully it doesn’t irritate people too much, but I have observed irritation on the part of others. If people understood the effort required, they might be a little less irritated.

Speech is a multi tasking function and when the person is multi tasking compromised, this contributes to the problem.

It’s not exactly clear to me how people do all that they do because I do some things very differently. So as a youngster I said a single word, which was the neighbours first name. I didn’t know it was that, I just must have heard it and tried to say it. My mother told me of this years later. Interestingly, I pronounced the ‘d’ as a ‘g’, and my son Sean also did the same thing at a similar age. The first word my father heard me say was ‘hello curly’ to a gentleman who would always say that to me. 

So I was 5 years old when I was able to show a memory for this person and what he would always say to me.

To go from that, to what I can do now verbally is quite a leap. What I can see in my difficulty, is very much a system that is behaving like a very short tape. Each time I reach the end of that small bit of tape, I have to keep restarting it.

If other people utilize this in part, I suspect theirs is very lengthy, as well as having additional function that doesn’t exist for me.

When someone with Rett Syndrome repeats a physical movement every so often, and it may be a particular eye or head or physical type movement, they are resetting their ‘tape’ and it’s due to functional memory systems being devastated by Rett Syndrome. It’s a strange and arduous way to function, but it’s something. 

It probably sounds weird to work like that but if an able person suddenly found themselves with similar impacted function, they would have to do the very same.

I’ve only ever seen one seemingly able person work this way and he sang and played guitar. If you study his movement and method of playing and singing you can see his incredible effort.

Physical memory is part of the ability to speak and you have to get words into memory before you can try to say them.

There are some families with a member affected by Rett Syndrome, who also have a relative with ADHD.

Whether their form of ADHD is the same as others I would need to spend time with those people to determine, but in the case of families where these conditions exist between close relatives, it is very likely the conditions are related and the person with Rett very possibly is dealing with that as a facet of their syndrome.

The person with ADHD here, has likely got a very short ‘tape’ and has to work very hard to stretch it to a more functional level. And as it becomes more functional, focus becomes more functional and focus can then extend beyond mere seconds allowing learning to improve and so forth.

The youngster with ADHD has to be watched carefully because in many ways they are floating about in a chaos and can have no idea of injury or threat.

The ‘tape’ obviously is a malfunction at the molecular level, halting and faltering with the person constantly trying to make do within these limits, but it was the best description I could use to provide an insight.

Fiona MacLeod (C)