this post was submitted on 14 Feb 2024
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Autism
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We definitely see the connection and think we have a pretty good idea why she is not taking the meds. A big part of the problem is that we have been told by school and doctors for a couple of years now what to do, and we have done as instructed because they are supposed to be professionals. And the result is like you described, she does not trust us fully anymore.
Im certain she feels better from the meds, but perhaps not directly. But all the fights and irritation that can be avoided has so many side effects. And we saw a very different person back when she took them, happy and at least more content. Its a bit of a catch-22 at this point and I just wish there was something we could do.
I never had meds as a kid, only as an adult. I hated them, and I did not feel better. I probably behaved better around others, but I was dead inside and it felt artificial. I knew what was happening and felt awful.
I am not going to diagnose someone online. But keep in mind meds are not for everyone and the change you see vs. What they experience may be vastly different things.
I wish you the best of luck.
While i think i knew that, its so hard to not lean towards something that (from my perspective) seems to work. But you are not the only one here with this idea, I cannot overlook that and might just have to accept that meds are not for her. Thanks
I could be totally off base. I only know my own experience. It's possible that hers is similar, it's equally possible that it isn't. I'm sorry that is not more helpful but I wanted to put it out as another viewpoint.
I am very grateful for all insight given here. While its not a silver bullet, its another perspective we can take into consideration when trying to help her
Okay, I’m going to explain something here that I don’t think any of these professionals have. Especially because school has been pushing for this too.
When you give a person a medication solely to lessen “behaviours of concern” (fights and irritation) then that is a chemical restrictive practice. What does that mean? It’s a term that gets used in the disability field, alongside four other types of restrictive practices (mechanical, physical, environmental & seclusion). Now these aren’t always used for bad reasons. But if the school is pushing for her to take them due to behaviour issues, that’s a chemical restrictive practice. If the medication is to treat the symptoms she feels from her ADHD then that’s not one. So I think it’s important to ask yourself which is the primary reason. Using restrictive practices can be valid, but only really as a last resort.
Source: Disabled adult with ADHD & Autism, as well as Bipolar, Ehler’s Danlos Syndrome and POTS. I’m a disability advocate as well.
Sorry I was a bit vague there I think, school has pushed for a lot of thing related to ADHD/autism and school absence (although at the time we did not know about autism), but not medicine. More in terms of how we should behave towards our daughter, push her harder to come to school etc. Listening to them is something I regret deeply as it has definitely scarred my relation with her.
Well at the very least you're willing to take a step back to assess the situation and acknowledge that meds might not be what's right for her, and by extension your family, which is an important first step.
I can understand how overwhelming it can be with all the advise coming from every direction, and also how easy it can be to trust the "professionals", but never forget - they are just people, often trying to make their job as easy as they can, and with biases that inform that (in this case mostly capitalistic ableism - focusing on how we need to "fit in" and be "contributing" or "functioning" members of society when the measure is potential employment and "independence" rather than focusing on our well being and on if our needs are being met), and gaps in knowledge like everyone else (you'd be horrified to know how few health and education professionals get any training or education on working with autistic people).
This could be a sign that she is content, it could also be a sign that she is being prevented by the meds from expressing her distress. You not seeing an obvious reason for irritation (that could easily lead to a fight be virtue of simply being overwhelmed) doesn't mean there isn't one, and while not all sources of irritation can be removed from our environment, removing the ability to express the feelings they cause is not the solution.
I just want to make sure I'm clear again - meds can be lifechanging for some people, I am not anti-meds on principle, what I am is cautious about treating symptoms over cause, as well as others' convenience over her well being, because that's unlikely to end well long term.
Lastly, I think if you've not come across them yet, understanding the models of disability would be a good place to start:
https://www.drakemusic.org/blog/nim-ralph/understanding-disability/
To be a bit blunt, I have been thinking of meds as a way to reverse a downwards spiral, a way to get out of a rut. Then we could take further decisions together with her if its something she wants to continue with or not, after "the worst" is over. But hearing what you and others here have said that might not be the best way forward. I have learned a few important things today I think, and while I was of course hoping for a "just do exactly this and everything will be fine"-advice, I was not expecting it.
The gaps in knowledge was undeniable at her previous school, as apparent not only by our situation, but some other former classmates of hers as well. At least we left them with a lot of reading material and advice on how to handle it in the future, lets hope they read it and act.
Thanks and I will read up on that, it looks familiar at a glance and I suspect it's stuff we have been reading about in another language
As I mentioned above, the fact that you are willing to take a step back to assess and correct your course is the important part, so many parents, despite what are generally the best intentions, get really defensive and refuse to even consider they might need to adjust their thinking, so going forward you've got a massive advantage. Good work helping the other parents out too!
I think the most important thing I would say to always keep in mind is that you can't "fix" autism (not even in a similar way to how you can "fix" ADHD), so while some medications can help with some symptoms, and some therapies (not ABA) might help with others, always stop and think (and teach her to stop and think!) - are you treating a symptom to make her life better, or are you treating it to make her seem "less autistic" to the world? If it's the latter, it's probably never worth it. Embrace the autism, embrace the community (which you definitely seem to be doing), and let her be her.
I really hope things go well!