Autistic Mothers gaining recognition for good and for bad

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Autism: 'hidden pool' of undiagnosed mothers with condition emerging Experts report growing phenomenon of women recognising themselves as they research their children’s disorders - The Guardian

The fact that this is happening to mothers of autistic kids whether they mothers themselves are diagnosed shows the refrigerator mother theory is not part of history, that a form of it lives on.

I was as reluctant to post this story as anything I have ever posted on WP, but the mothers of autistic kids need to know that there is this risk.

I already knew that was real. It is true to my experience of parenting, regardless of whether the media acknowledges it or not.

Notice that most of the problems have been with the NHS.

Still want that "help" from the government, American autistics??

Because this is EXACTLY why I don't. This is my experience of the support system either as a self-pay patient or with private insurance. I'm sure it would be just as bad with "help" from the government, except I would have even less agency.

This is the experience my cousin is having as a "beneficiary" of Medicaid. Currently, they have (for the second time) misdiagnosed her as being bipolar, and have her on so many medications that she sleeps 18 hours a day. Her mother is, once again, raising her children (which was not the case a year ago, before she decided to get some therapy for her ADHD issues).

Giving "authorities" more control is only going to make matters worse.

My mother is NT and she could fall in this ASD category for mothers who are undiagnosed because she also fought for me and knew I had something. This is just a stereotype about NTs again saying they will just go along with what the doctor says. Oh the doctor says my kid is fine so I will trust him and back off and not worry. But however she did go along with what my school said when they said I should be in a special classroom and I wouldn't be able to function in mainstream but now she realizes that was a mistake on her and my dad's part and she learned how the system worked and learned how to advocate for me and never again did she allow me to be put in such class and never wanted me in any special schools for kids with a learning disability. Yes she was accused as seeing me through roses by my school principal and school staff.


But I think the point of this article is this isn't about autistic parents advocating for their child, it's about how their autism makes them approach the subject differently due to their communication differences so it makes doctors get the wrong idea about them while NT parents are more likely to not have doctors think wrong of them when they do the exact same thing ASD moms are doing. Some parents worry about doctors thinking they have Munchuasen by Proxy because they know there is something going on with their child but yet they appear fine to the doctor and doctors will only go by what they see in their office, not what the parent says. I still haven't heard about any parents actually being accused of it except for of parents who had a child that had a rare disease that made them ill when under stress or had a condition where they bruise easily or or get broken bones but never about parents of kids with mental issues or autism or anything that is inside their brain.

No, the REAL answer would be to reform the services so they actually HELP people instead of screwing us over even more. I'd love to see that happen. I'm just sick of holding my breath (and putting my family at risk by "coming out" in an attempt to teach people to know better).

Until we manage to make some significant progress toward doing that, handing more control over to "authority" is making the problem worse, not better.

I know too many people who have managed to muddle through, however clumsily, with support from friends and family. Until they finally "do the right thing" and get "professional help." Then they completely collapse, and have what appear to be irreparable self-esteem issues and PTSD on top of whatever drove them to seek assistance in the first place.

More letters to add to the list isn't help. It's harm.

I don't know everything to do, but one thing is to kick the do-gooder mentality out.

Get rid of the idea that service providers are there to "save" people who cannot do for themselves. This crap idea that reeks of 1920's progressivism (if it's an idea from 100 years ago that brought about bad fruit, is it really progress??) that things will be wonderful if everyone is capable, and if things aren't wonderful incapacity must be at fault.

Transition to the idea that they're there to help people improve their functioning. Stop presuming incapacity any time things aren't just so. Because, frankly, wonderful isn't a steady state in anyone's life. All the people that I know who are trying to pretend that it is are stressed so far the freak out from trying to pull that off that it's detrimental to their mental health and that of their children. And I note that most of the people I know who are doing that are doing it because they are receiving services and terrified of losing their kids.

Seems to me that the idealism is a problem, not a good thing, and until it is excised, these services aren't a service at all.

Client empowerment would also be a nice reform. As a real thing, not as a buzzword that basically ends up meaning, "You are empowered to comply with what you are told."

I would like to see everyone, regardless of whether they are self-paid, privately insured, or using public assistance, be treated like a thinking partner in decisions about their/their child's care. If you are able to "speak" (whether in words or with assistive communication or through purposeful behavior), you are able to have a voice in your care. If you are able to live independently and have a relationship with another human being capable of producing children, you are. Apable of being treated like a reasonably intelligent human being (at least until you prove you aren't).

I'm sick of being treated like a passive consumer of care. I have more agency at WalMart than I do at the psychiatrist's office. The folks I have seen who are reliant on public assistance in the US have almost no agency at all. And that's a damn shame. Needing help to foot the bill doesn't make you dumb, and shouldn't render you helpless and voiceless.