ME = Late onset Autism?

This discussion is interesting because it touches on how we use diagnostic labels. What we have here are two diagnostic labels: autism/ASD and MECFS. Both labels describe collections of features that often go together and whose cause or causes remain unknown.

When you think about it, it doesn't actually make a lot of sense to make a claim about the relationship between these two, because we don't know the cause of either.

Just for argument, let's call autism/ASD "Symptom collection A" and MECFS "Symptom collection B". Would it make sense to say that "Symptom collection B" is late onset "Symptom collection A"? The answer is no, because we don't know what causes either. All we know is that there are some features shared between the two collections and some (a lot of) features that are different.

 

One of the problems we have with BPSers is that they are "lumpers" as opposed to "splitters". With their MUS and FND they include as many diseases as they can get away with and claim is as a single pathology.

I firmly believe that you can only understand pathologies if you look for differences rather than commonalities. If fevers had been considered as one disease we would never have discovered the range of bacteria and viruses.

I sympathise with trying to understand what is going on with your health Wastwater, we have to be our own physician because the medical profession either have no interest or are ignorant about ME (with a few notable exceptions).

Autistica https://www.autistica.org.uk are looking at how medicine can best fit the unique needs of patients with autism and it is a very neglected area. Having ME on top of that makes life even more challenging.

One of the things that is universal is trying to understand how other diseases fit in with ME; is a new symptom just more ME or something that could be treated? Then each individual disease magnifies the effect of others. People have the dilemma of the one that will be helped by exercise and ME which will get worse!

Things are more hopeful than they have been for years so that is good.

 

What you say makes a lot of sense @Mithriel. I do feel the same about the "lumpers", that doesn't seem to me to be a good way of moving forward in our explanatory models.

I also hear you about the problems of deciding whether a symptom is just part of ME or whether its something new that requires a different treatment. Its really important to know if a symptom is linked to some other cause.

But its never made sense to me how doctors say "Oh, that'll just be your ME again". Since we don't know what causes ME, we cannot infer that its the "cause" of anything. All we can say is "That new symptom is often reported by patients with a diagnosis of ME".

 

Well said. I too don't understand why people anyone would think the two are linked in any meaningful way.

 

oh I do.

Some of the cognitive issues can cause 'social' issues, difficulties in comprehending others, difficulty in expression of various things.

To the lay person that sounds like 'autism', and TBF before ME I could cope a lot better, ME has made certain aspects of my ASD more expressed, left me with less to work with to 'compensate'.

When my ME is 'bad', amongst other things, I go from a 'high functioning' person with ASD to someone who is unable to deal with others, or various aspects of the environment, effectively.

So, whilst I agree that there is probably no meaningful link between ASD and ME, ME makes my ASD much more so, it can turn me from ASD to 'autistic'.

 

I am not really sure what you are trying to say here but if it’s autism and ME being connected and you can get late onset Autism, then no that is not possible. I have worked with children with Autism for the last 14 years and I also have a child with Autism. Autism is something I know a lot about through experience and training. People with Autism have a social, communication and understanding difficulties. They see the world very different to everyone else. There are various degrees of Autism, on the milder end it’s barely noticeable to those that know nothing about it, although it may be noticed that those that have it maybe a little different from there peers. They are very good with numbers and anything scientific, like ICT. Those that can learn who are really clever are often referred to as higher functioning Autism.

Those that are more severe, can still be classed as higher functioning Autism if they can speak and learn. But they very often represent the same difficulties as someone with very severe Autism. Like change, social aspects of understanding etc. They often have huge meltdowns when there is a change in their routine or they don’t understand the world around them. They usually have sensory impairment which maybe sound, lights or smells, sometimes it can be all 3. My son used to have a huge meltdown down if I took him to a supermarket because of his sensory impairment and if there were loads of people around. He couldn’t cope in situations like that. My daughter said to me, in describing my sons understanding issue, that he understands facts but not all the bits in between.

Those with very severe Autism often don’t talk, they have severe behavioural issues with all the above.

To me and everyone I know who has loads of experience with Autism, there can be no link between ME and Autism. Autism is what you are born with and is genetic in a lot of cases. There is so much more to Autism than I have said. I hope I have made sense lol.

Edit: what I will say though, is like all other illnesses, if you have an illness that have similar symptoms to Autism, then they will feed into each other and make it worse and challenging.

Edit 2: just to understand a little more about how it happens, in one of our training sessions we watched a video clip of what happens to the brain with someone with Autism. When a baby is born and the baby goes through different milestones of development, the connections in the brain don’t connect up where they should. That’s why it’s very difficult to detect those that have it on the milder scale before the age of 5, sometimes longer. In my sons case we knew early on when he was 18mths that he wasn’t developing in the same way as his peers and had been through the system since then to find out what was wrong with him. All they found was he had no u derstanding of the world around him. But even then he was 9 before he got official diagnosis of Autism.

 

From my point of view the makes perfect sense.

As a medic I cannot see any connection between autism and ME.
The suggestion seems a bit like saying leukaemia and heart failure are connected because you get tired with both. The central defining features of autism and ME are unrelated.

 

I seem to recall, from the time of the MMR debate, discussion of a particular form of autism referred to as regressive autism, or something of that sort, which fuelled the controversy. One wonders whether some might see similarities between that particular form and a form of ME.

 

What a lot of people don’t understand is that it’s more common than not for that to happen with a child with autism. It’s not that they lose their speech, they often don’t see a need to talk in a lot of cases or it’s because of their social communication difficulties. They get locked into their own world because it’s where they feel safe. As time goes on sometimes they regain some speech or not at all. They do learn other ways to communicate though, either through Makaton, a form or sign language that is used with speech, or PECS, a visual communication used through symbols.