I think humidity of your climate plays a role in this between regions.
I was fully in the “don’t make your bed, let it air out” camp, then I realized the dogs slept on the unmade bed during the day and I inhaled dog hair at night. I now make the bed, though I am constitutionally against it.
It’s really great that you’re seeking help and talking openly about this! Encopresis is too often shameful and kids suffer when parents don’t speak up.
There’s lots of conflicting advice out there and I strongly recommend you find pediatric autism specialist if as all possible. A generalist MD or therapist is not likely to be knowledgable about this topic.
This website, despite the sales pitch, has good information and a detailed manual. It might be worth reading. https://www.encopresis.com/encopresis-manual/
Editing to add that interoception may be part of the issue. People with ASD often have more distant perceptions of internal bodily sensations than allistics, so your son may only perceive his need to defecate at a 1/10 where another kid might feel it at a 7/10. Teaching body check ins and mindfulness can be helpful, but is tricky with young kids.
Thanks for the additional detail here! I knew I was making a broad generalization with “ground up” and don’t mean to imply that if you start with details (ground) you never make it to the big picture. As you said, more data and examples are necessary and while the overarching structure can eventually be seen, autistics are less like to wave away outliers as quickly as neurotypicals.
Still, I think it’s been well documented that in general autistics much more likely to utilize inductive reasoning whereas neurotypicals rely more on deductive reasoning. Both have strengths and downsides and work best in combination.
It’s almost as if we need each other and should cherish the differences that make us better together! In my experience, that means NTs need to adjust more to autistics because autistic people are constantly adjusting to a society that overvalues NTs.
It’s no so much stacking that’s a notable symptom, it’s collecting, arranging, sorting and displaying, often without playing with the toys as intended. Instead the focus is more on neatly sorting by color / shape / size etc. and sometimes preferring to keep them in that configuration over playing with them.
This is similar to the tendency for some autistics to focus on the part of a toy, like spinning the wheels on a toy truck, instead of playing with the truck doing truck things.
While these are commonly associated with autism, these two examples are neither necessary or sufficient symptoms to diagnose autism. Meaning that you can see this symptom in an allistic (not autistic) person and it does not mean they have autism and you can have autism and not have these symptoms.
One thing common to many autistic people is ground up processing. Their minds do incredibly well with details (the spinning truck wheel, the defining characteristics of the toys they sort) but sometimes don’t see “the big picture” as easily. It can be an incredible strength in many ways, especially when embraced and harnessed instead of shamed and “corrected.”
If a professional is required by law to make these reports, and makes you aware of these duties at the start of your care, then there is no valid ethics complaint and no violation of trust. The therapist must tell you in their informed consent about these limits to confidentiality and should have done so before any personal information was disclosed to them.
While there is a potential of some harm due to this disclosure, therapists are not in a position to investigate and determine if abuse / credible threats of violence occurred and are explicitly not supposed to do so. They are supposed to make a report and allow other state agencies to investigate. If OPs family ended up hurting someone and the therapist was drawn into legal proceedings, they could equally be sued for having this information and not following their duty to warn.
OP, these issues do belong in therapy and you should be able to get support for them.
I’m not in Europe so I don’t have a whole lot of knowledge about the healthcare system or how to direct you unfortunately. In terms of books I like Devon Price’s Unmasking Autism (one of the best for describing the experience of adults on the spectrum) and for younger AFAB folks I like Spectrum Girls Survival guide. I have skimmed and liked Field Guide to Earthlings but haven’t read it completely.
Also it’s a small organization but Autism Learning Lab is building some nice resources and education. I still believe a full formal social developmental assessment is helpful, but it’s expensive and if you don’t find the right practitioner they can still miss the boat. I tend to advise people to ask a lot of questions about their clinician’s expertise and experience with autism. Learning subtle signs beforehand and asking if they are aware of the “pink flags” etc. described here could help.
I work in the field and am constantly shocked at the number of otherwise skilled practitioners that have a huge blind spots for autism, especially mild or low support need individuals.
The thing about masking is that it can also hide “impairment” so a good diagnostician should ask about the ways you might mask and the physical and emotional costs of the masking. Sure you can socialize with the best of them, but are you a hollowed out shell at the end of the day? Does the masking leave you with zero resources for your hobbies, less capacity to deal with stress, and burnout? High maskers tend to have higher burnout because they are working hard to function in a world that expects them to appear counter to their nature. All too often someone can appear to function typically but a few times a month or a year they have epic drops in functioning and can’t get out of bed or leave their dark room. They’re diagnosed with depression, which admittedly can be exacerbated by burnout. However, treating burnout with depression coping skills might miss the mark. Anyway, this is a huge frustration for me professionally and I’m sorry you are dealing with it.
I’ve had plenty of men tell me they refuse a vasectomy because it would impact their testosterone production… which is just not true, not how the body works, and has been proven over and over. So despite the procedure being the better choice for their family planning etc, they make choices that are less safe, less effective, or offload the family planning to their partners because they’re unscientifically afraid their masculinity will be affected.