agonyaunt | (no subject)

(no subject)

Dear Care and Feeding,

I am a neurodivergent mother of two children. My eldest daughter, 6, shows many traits that align with autism as it presents in girls. She showed traits of autism as early as 12 months. She is hypersensitive to pain, has gross motor difficulty and overwhelming sensory sensitivities, struggles with social interaction, is very literal, prefers being in charge and struggles with collaborative play, and has a hard time regulating emotions, among other issues. She is also brilliant, inquisitive, energetic, creative, and has an incredibly quick mind and strong sense of justice. She is doing and has done wonderfully in preschool, school, and at home in large part because we are intentional (and very lucky) in finding environments where her needs are accommodated and her gifts are seen and supported.

She’s just started first grade, and I am seeing—and she is talking about—masking (“I’m a different person at a school”), difficulty with social situations (she just sort of freezes up, skips recess a lot in favor of staying inside with her teacher), and I worry about an increased need for accommodations and social issues becoming more complicated. I feel like an official diagnosis would help us access resources and support and access accommodations as needed. It would also possibly give her a framework with which to understand her neurotype and access community. My husband refuses to consider having her assessed and feels that the possible stigma is too great a risk. He is also very dismissive of my experience, educational resources about autism and girls, and feels that she just needs to try harder, and that every girl has the traits detailed in the resources and research I’ve provided. I really don’t know what to do.

—Actually Autistic

Dear Actually,

You may not be able to change your husband’s opinion on this, but his opinion shouldn’t supersede your daughter’s potential long-term needs. Trust yourself on this. You’re acting on experience, observation, and instinct in wanting your daughter to be evaluated. It sounds like you’ve been patient in waiting as long as you have to start the assessment process.

There are a limited number of outcomes: Either your daughter will be on the autism disorder spectrum or she won’t. If she is, the earlier she receives the proper support and accommodations, the better. If not, your family will have a definitive answer here, and you can address her challenges at school differently. There’s no downside to asking for a diagnosis—except, perhaps, that your husband may continue to be unsupportive. Unfortunately, it seems like you may be dealing with that no matter the outcome here. I wish you and your daughter the best as you navigate this together.

—Stacia

https://slate.com/human-interest/2022/03/son-wants-sibling-advice.html

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I have given advice on this exact situation what feels like a bajillionty times over the past two decades. My advice is very gordion knot - your child has two parents, you're one of them, and honey, they don't check that you have DH's permission at the door.

People always say "it's not that simple", but they never quite explain why not. They just don't want to do it, for reasons that probably make sense to them.

And I get it - it's going to be a real hassle once you actually have that diagnosis in hand to talk to your husband about how you made an executive decision on your daughter's behalf.

But fuck that shit. Your responsibility, as always, is to your kid.

(I have very strong opinions on this subject, okay?)

I feel exactly the same. "Fortunately, you only need the consent of one parent to have her assessed for ASD, so have her assessed for ASD and let the chips fall where they may. Either way, be prepared for Husbando to throw a man-tantrum about it."

LW could use for a crack team of parent operatives to put her husband in a sack long enough for her to get her daughter evaluated. I am sorry that I am not in a position to recruit them for her.

It's not even necessary. If she's in the USA, the schools are required to do an evaluation even if her daughter is not enrolled in the public school system.

Send a note to the school formally requesting an evaluation, let those wheels turn. Unless Dad is the usual contact parent - which fathers almost never are - he doesn't even have to know until it's done.

Now, I'll be the first to say that the evaluation by the schools is not always the best, and sometimes you have to go private practice... but it's a place to start while you figure out what insurance will and won't cover if you gotta do it the other way.

Everything you say is indubitably true. I just want to put him in a sack for his prideful abusive intransignence. And maybe beat the sack with sticks.

I hesitate saying this with my name attached, but...here goes nothing.

I have never sought or received a formal diagnosis, but I am likely on the autism spectrum. My parents had similar conversations starting when I was about LW's daughter's age; I believe a teacher may have mentioned the possibility to them directly. My mom – who, I want to make clear, is a truly wonderful parent! – was justifiably concerned about the stigma of a diagnosis, and since I was doing well academically and did not require classroom accommodations, they never had me evaluated. Among other things, I had significant social difficulties that led to severe bullying, from elementary school until I left that school district in my teens.

Because I had never gotten a diagnosis, or been told that my difficulties came from something outside of my control, I blamed myself for much of what I experienced. As a child, I had enough social awareness to recognize that there was some intangible difference between myself and my peers, but not enough to "fix" it, and I was angry at myself for being unable to master skills that seemed to come naturally to my classmates.

Even if LW never gets an official evaluation for her daughter – though she should! – I hope she at least makes sure to tell her daughter, as she gets older, what may be the cause of issues she experiences. It sounds like LW does understand how important that is – perhaps because of her own experiences – and she clearly makes an effort to understand her daughter's particular challenges.

As for LW's own relationship: A spouse who is outright dismissive when you tell him about your own experience is not being a good spouse; it suggests to me that hubby doesn't fully respect LW as an equal.

Variations on this are what I tell everybody who is asking the other question: should I tell my kid about their diagnosis?

My answer is always yes, yes, yes, yes, YES, yesyesyes! for pretty much that reason. Never, ever, ever lie to your kid about themself.

Yes, all of this. My childhood/adolescence would have been much less of a misery if I’d been diagnosed with ADHD before age 20 — I was “gifted,” so I was told that I was just lazy, not living up to my potential, and not trying hard enough to “fit in” with the bullies who had me wanting to end my life.

The adults in my life profoundly failed me. I hope this mother does better by her kid, regardless of her husband’s uninformed opinion.

this was my experience almost to a 't', except that I didn't get diagnosed until I was in my early 40s. Just knowing that all the things I had internalized as 'character flaws unique to me that I could overcome if I just tried harder' are actually part of my ADHD presentation has been life-changing.

Thank you both above for sharing these experiences. I could third them, which is unsettling. Aside from any diagnosis, I've certainly used my experiences to shape my parenting and be responsive to my kid's needs and quirks.

I feel for the letter writer, trying to give her kid the benefit of hard lessons and getting such infuriating nonsense from the spouse.

Also have been showing ADHD symptoms my whole life, also got the formal dx at age 40, and starting medication not only fixed a lot of the things that turned out to not be 'character flaws' or 'laziness', taking the meds completely cures my lifelong sleep disorder that no doctor has ever had a clue about. I have arranged my entire fucking life to accomodate that sleep disorder! it has stopped me from doing SO MANY THINGS! It's great that I can fix it now but dear fucking God, that would have been useful at, say, age 20.

As for LW's own relationship: A spouse who is outright dismissive when you tell him about your own experience is not being a good spouse; it suggests to me that hubby doesn't fully respect LW as an equal.

It's bad enough being dismissive about their partner's opinions and concerns in general, but when they're informed by personal experience and he's thus dismissing her entire experience and judgment and like... external knowledge with sources that's a whole body of science and shit that she knows about and he doesn't! ????? I can't believe the response didn't address this. I have a hard time understanding how she got to the point of having a kid this age with him.

Go for a *good* evaluation before your child gets anxious and angry! Then if it is a related but not autism diagnosis, it will be accurate and properly accommodated.

(My AFAB non-binary child suffered greatly, first from no diagnosis, then from the wrong diagnosis. They communicate more closely to nautistic kids than autistic kids and was inadvertently an outsider.)

Everytime I read more symptoms for autistic children, a lightbulb goes off in my head. So *thats* why I filled every recess with activities so I didn't have to go outside and try to make friends and play lol

Husband is a jerk but I think this + the comments show why it's important to think about this stuff through a child-focused lens. I think from an adult perspective, it's not uncommon to feel like the stigma outweighs the benefits. But... The benefits of additional resources, explanations, and guidance are exponentially more helpful to children than adults.

Not to mention, the stigma's still fucking there even without a diagnosis. WITH a diagnosis you have the choice to disclose. Without it, people just make up their own stupid guesses.

And those guesses are ~~almost~~(?) always character judgements: difficult, picky, flighty, lazy, crybaby, etc.

I got dx'd with ADHD at 33, and my mom just got her dx at 62 (SURPRISE :| ). Finding out that I did X because my brain was wired for Y was so much better than thinking I was just a lazy POS who was doomed to self-sabotage into failure forever.

YES. When we started down the diagnosis path for our kid a decade ago (ADHD & ASD), so many people told us not have anything officially documented because he might get "labelled", which blew my mind. How was he going to get any support or help for his obvious issues if he didn't get a diagnosis, first?

I feel like the world has changed a lot for mental health and neurodivergence awareness, and mostly for the better, thank goodness.

I wasn't diagnosed autistic until I was 27. If I was diagnosed in my high school, or worse before, they would have absolutely have barred me from the classes I needed to get into university. I scraped my degree, barely, because I needed support for my autistm that I didn't have...but if I was diagnosed as a presenting female I'd never have got there. It isn't that simple. Diagnosis on paper is not always good.

In the US, barring a child from classes just because they have a diagnosis of disability is illegal. Very illegal.

Yet it happens all the time. They just find other ways of justifying it. Persuading the child to ask to do classes they don't want to because 'that will be easier for you'. Putting kids in lower capability classes and making statements that they can't focus on harder stuff. The system likes out its rear to attack disabled people. And sometimes if they diagnose you early enough then the system is rigged. You are never given a chance to prove you can do better so you slide down until by time high school hits you really are too far behind to break through without massive stress....and if we try that is turned around as proof we couldn't do it in the first place. The whole thing is toxic and it happens worldwide.

But without a formal diagnosis you have no recourse if they do this to you.

Those with a diagnosis don't find it helps in this situation. The world is built against autistics sadly.

I disagree. As an autistic individual, I find that good legal help always helps in this situation.

Well that (legal aid) is a discussion of privilege that is a whole other kettle of fish. But we're not going to agree here so I'll just leave it there.

Well, you're right that we're not likely to agree given that my advice is based on the real world experience of people with diagnoses who are in the school system today, and yours is based on your belief about what would have happened to you over a decade ago.

It happened to my friends. My community discuss this sort of thing often. It happened in my school while I was there to another student. I am in a different country but not all my friends went to school here. And it happened to them. Many of them are still dealing with the trauma of it. But frankly I don't like the way you are speaking to me now so if I see you've tried to continue the conversation I will not read the comments.

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