Meet up with parents of kids with mild autism

[Anonymous]

Anonymous wrote:

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

I think it gets the point across that with aspergers/ HFA/ ASD level 1 you are dealing with someone with an Invisibility Disability. Yes they have consistent deficiencies within executive functioning, social understandings, and verbal communication but they can mask when they want to or have the energy to. They may even have some hyper focuses.

In contrast, ASD level 2 and 3 is visible. Speech and mannerisms are not typical, learning functionability not the same, and they may need 24/7 monitoring so they don’t hurt themselves or others, on accident.

All levels need support and understanding, in different ways.

You're describing level 3. ASD level 2, at least in a lot of medical literature, is still considered high-functioning. Which in makes sense- There are some level 2 ASD kids who blow some level 1 ASD kids out of the water academically, and are better behaviorally in home/classroom environments. But their social functioning is very limited.

[Anonymous]

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

Me again. I did not mean to hijack this post (I too, would like to find community with other moms of Autistic kids, level of "functioning" not withstanding). I understand the points others are making - as the parent of kid with a Level 1 diagnosis I do not necessarily understand the challenges of a parent whose child engages in dangerous stims or can't independently toilet. But I don't think the term "ableist" is a catch-all or a term to throw around to shut down the discussion. I think that it is a good term to use because it emphasizes that a lot of the language we use is from a non-Autistic perspective. There are very, very sound reasons why a lot of the adult Autistic community objects to functioning labels, levels, etc. My kid completely shuts down when overwhelmed (cannot speak, cannot regulate), does not have the executive functioning skills to shower effectively or keep track of any assignment whatsoever and struggles every day to be accepted and understood by neuro-typical people: family, friends, teachers, paraeducators, strangers. But she's completely verbal (when not shut down) and talented in some ways that NT people can understand, so she's considered "high functioning" and the expectations for her are high. On the other hand, someone who is non-speaking and engages in visible stims or other behaviors that are not understood or accepted are labeled "low functioning" and sometimes stuck in programs that are like babysitting and nothing is expected of them. The book "Sincerely, Your Autistic Child" was illuminating to me. It's a nuanced issue, I understand, but ever since being educated about this I just wince when people say "mild," "high-functioning" or even "level 1." My kid hates it, so I'm somewhat influenced by this (it's my kids special interest), but I think we need to change the language.

[Anonymous]

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

In this case the op is looking for parents who's children are likely to function "as expected " in life versus parents who's children are not expected to function "as expected" and to need substantial support. Is there a better way to say it? As expected functioning vs Hugh functioning? Precise words are necessary and part of clear communication.

[Anonymous]

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

This is why we can't have meetups.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

This is why we can't have meetups.

I was just thinking the same thing!!

And the other reason we can’t have meet ups or meet in waiting rooms is that the parents of autistic kids without behaviors are mad that the kids with behaviors disrupt classrooms and get services more quickly. Everyone is mad at everyone. We are not a cohesive group at all.

[Anonymous]

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

As the parent of a child who is considered 'high functioning' or 'mild'-she's still absolutely Autistic. I don't find it invalidating, I use it more as a descriptive term and it's not inaccurate. I'm not guilty of anything...if someday my dc chooses to identify herself in a particular way (Autistic, asd, neurodivergent, ect) I will of course use and respect that, but she's young and I'm the one right now who describes her.

I'm not local, but if I was going to plan a group, I'd make it open to any parents of neurodivergent kids. We can all support each other.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

This is why we can't have meetups.

That’s not true. I’m the PP and I have meet ups and friends whose kids are Autisic. I don’t judge anyones choice of words - I try to educate from my kids point of view and adult autistic people I know in an open minded way but the language you use is up to you.

[Anonymous]

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

I super disagree with this. Autism is extremely broad. You can have kids like mine who present as basically neurotypical, and those who are extremely restricted in what they’re able to tolerate and have behaviors that require a great deal of accommodation. It’s obviously not the same diagnosis - we’re just all sitting in this label bc no one has come up with a better way to categorize humans. Without the level designation it’s impossible to make recommendations or give advice to people

[Anonymous]

Geez poor op just wants a meet up and we have to hijack this post with the same old what is autism actually argument. They seriously need to figure out what this diagnosis actually is so parents and asd folks can find a community instead of lumping them all together and gaslighting all of us with ‘it’s a spectrum’. Yeah being a human is a spectrum but I rarely try to find meetups ‘with other humans’

[Anonymous]

Anonymous wrote:

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

I super disagree with this. Autism is extremely broad. You can have kids like mine who present as basically neurotypical, and those who are extremely restricted in what they’re able to tolerate and have behaviors that require a great deal of accommodation. It’s obviously not the same diagnosis - we’re just all sitting in this label bc no one has come up with a better way to categorize humans. Without the level designation it’s impossible to make recommendations or give advice to people

Agree with this. I don't know why we've decided this is a good way to proceed when it's obviously wrong. And unhelpful.

[Anonymous]

I think trying to micromanage the classification of who may do well in a new group setting may just be limiting a child or a parent from a fall outing in an area park or other venue. OP if you know of at least one other interested parent or family I would just choose a local place that might offer a walking trail, a playground, an open area for simple ball throwing or kicking a soccer ball around and a picnic area. In this way anyone could go to the venue with open expectations and choose an activity on a lovely day that their child would enjoy in any case. You would see others and families and could join in or not.

[Anonymous]

Lightly fried autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Does ANYONE who has a kid with "mild" Autism or "HFA" really feel like their kids are "mild" or "high functioning?" Why do we keep perpetuating these labels? They are so invalidating. As a parent, I feel like it's our problem and we have to stop perpetuating ableism. It is so much easier to say my kid is "mild," or "high functioning" or "on the spectrum" than to say they are Autistic, as if that is a dirty word. I was guilty of it myself, but now that I know better I do better.

This is why we can't have meetups.

That’s not true. I’m the PP and I have meet ups and friends whose kids are Autisic. I don’t judge anyones choice of words - I try to educate from my kids point of view and adult autistic people I know in an open minded way but the language you use is up to you.

It was a sarcastic/flippant joke. But I'm happy to use whatever term. But a meetupnwith a parent who's child isn't toilet trained and is nonverbal wouldn't be a place I could offer any experience or insight whereas a meet-up with a parent who's bright child can't connect to the coursework at school or who is starting to be excluded from social groups they were once part of, might have some words of experience for me.

So what term would you like to use to help sort that out?

[Anonymous]

This is all fine - but a huge problem that the Autistic adult community has is with "Autism moms" (i.e. US) defining all of this. If you read the literature BY Autistic people you'll find that the majority of the Autism community agrees that functioning labels are problematic on a lot of levels. I choose to listen to them.

[Anonymous]

Anonymous wrote:This is all fine - but a huge problem that the Autistic adult community has is with "Autism moms" (i.e. US) defining all of this. If you read the literature BY Autistic people you'll find that the majority of the Autism community agrees that functioning labels are problematic on a lot of levels. I choose to listen to them.

There are some adult autistic people who think that their autism just isn't the same as that of their non-verbal low-functioning brothers and sisters.

For obvious reasons, for those people, it's mostly their parents speaking for them rather than other autistic people.