SN “Believers” vs SN “Non-Believers” - how to do what is in the best interest of a child

[Anonymous]

I mean, not every lump is cancer. Not every fever is the flu. But that doesn't mean the person identifying the symptom is imagining it. And it doesn't mean they are wrong to have it checked out. That's where the low-intervention parents go wrong. They're missing an opportunity to identify and treat what might be a serious problem. And then if it turns out not to be, they claim they were right all along and belittle the intervening parent. But the intervening parent was never wrong to have identified a possible issue.

[Anonymous]

The problem is it isn’t like they can ethically use identical twins who are borderline being diagnosed with a disability -let’s say with a diagnosis of autism -and give one ABA and/or twin speech therapy or occupational therapy and the other one receives nothing.

So many places that specialize in autism are going to see everything under that light and diagnosis almost all children who go there with autism just to err on the side off caution because insurance will pay for ABA (often times that that center provides).

[Anonymous]

Anonymous wrote:I think it depends on how knowledgeable the parents are. If they're down the internet woo rabbit hole in either direction, if they think autism is a hoax and what's needed is onions in the socks, or if they're just a typical DH who doesn't want to admit there's a problem so he refuses to do any reading and refuses to see his child around other children because the disparity makes him uncomfortable, then their opinion is of no value.

If both parents do some research and have at least moderately informed opinions, then I think you have to try to meet in the middle. It's extra hard when clinicians disagree with each other, but that happens too.

This is the answer.

Also, I am the poster above who wrote about remediation. We are discussing SN in general and not autism specifically. Though my friends with autistic children would disagree that social skills remediation is impossible, and would further disagree that their early interventions did not have a positive outcome, I'm primarily referring to: language-based LDs; dyscalculia; and also the fine motor skills that cause and/or contribute dysgraphia.

On another anecdatal note, I have a friend with a child my SN DC's age who has a similar DX to my DC. They were also counseled to throw the proverbial remdiation book at their DC and the parents balked. Said the diagnoses was not accurate and did nothing. Now at 17 years old the difference between my remediated DC and their non-remediated DC is, sadly, stark as can be.

[Anonymous]

Anonymous wrote:The problem is it isn’t like they can ethically use identical twins who are borderline being diagnosed with a disability -let’s say with a diagnosis of autism -and give one ABA and/or twin speech therapy or occupational therapy and the other one receives nothing.

So many places that specialize in autism are going to see everything under that light and diagnosis almost all children who go there with autism just to err on the side off caution because insurance will pay for ABA (often times that that center provides).

Which places? We got our child evaluated at CAAT at the evaluator did not recommend ABA. In fact they didn't recommend any services we weren't already doing (though if we hadn't gotten the diagnosis we would likely have stopped them because they are kind of inconvenient for our schedules, but we manage). They diagnosed our kid with autism, which wasn't entirely expected but now it is so obvious to me. If anything the autism experts are the best ones to rule it out. I never got the sense our evaluator saw "everything under that light". Too many evaluators that aren't autism experts just punt the question by saying "could be autism but can't diagnose yet!". You can absolutely say yes or no for a 4+ year old.

[Anonymous]

Anonymous wrote:I mean, not every lump is cancer. Not every fever is the flu. But that doesn't mean the person identifying the symptom is imagining it. And it doesn't mean they are wrong to have it checked out. That's where the low-intervention parents go wrong. They're missing an opportunity to identify and treat what might be a serious problem. And then if it turns out not to be, they claim they were right all along and belittle the intervening parent. But the intervening parent was never wrong to have identified a possible issue.

+1 it's not just parents. Pediatricians do this a lot for autism and developmental delays. I don't know if it is just a fear of making parents angry or a lack of training. Or they are consciously or unconsciously rationing limited insurance-covered evaluation services

[Anonymous]

Conditions can be both over diagnosed and underdiagnosed at the same time in different populations.

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

If you look at the diagnostic requirements, autism will be quite obvious to everyone in multiple contexts.

Even those at Level 1 require support to manage social interactions and behaviour

Level 1: Social communication
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Level 1: Restricted, repetitive behaviors
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Independence is possible but requires substantive supports.

[Anonymous]

I think I understand what you’re asking. My sister is autistic and adhd. My mom took her to therapist after therapist who taught “life skills” and “executive functioning”. My mom made sure my sister always had cool clothes and shoes to fit in (sounds dumb but my sister has no awareness of things like that and got picked on for still having light up shoes, so my mom fixed that quick). My sister excelled in school, was able to focus and has a STEM masters. At the time, numerous doctors told my parents to not put her on Ritalin as the thought then was that it’s drugging kids.

My sister is mid 20s now and won’t speak to my parents. She is pissed about being forced to “mask “ and is pissed she wasn’t given Ritalin. One of her beefs is that she was taught to look people in the eye while speaking. I think my sister is crazy. Our parents were loving and very involved. I know if she had other parents she would have floundered. My sister isn’t a parent and I think your views change. She’s just a typical genz.

[Anonymous]

Anonymous wrote:Conditions can be both over diagnosed and underdiagnosed at the same time in different populations.

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

If you look at the diagnostic requirements, autism will be quite obvious to everyone in multiple contexts.

Even those at Level 1 require support to manage social interactions and behaviour

Level 1: Social communication
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Level 1: Restricted, repetitive behaviors
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Independence is possible but requires substantive supports.

It seems like you copied and pasted this from somewhere but I can't tell where. Why'd didn't you include a link for attribution?

As for your assertion that "If you look at the diagnostic requirements, autism will be quite obvious to everyone in multiple contexts" - that is simply false. Most people are not qualified to identify autism. Many people tell us they never would have noticed my child is autistic, but she meets every single one of the criteria and has displayed symptoms since infancy. People have certain perceptions of what autism is, often based on older definitions. That is irrelevant to the fact that my child has real support needs and is asking well precisely because she has supports.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Conditions can be both over diagnosed and underdiagnosed at the same time in different populations.

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

If you look at the diagnostic requirements, autism will be quite obvious to everyone in multiple contexts.

Even those at Level 1 require support to manage social interactions and behaviour

Level 1: Social communication
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Level 1: Restricted, repetitive behaviors
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Independence is possible but requires substantive supports.

It seems like you copied and pasted this from somewhere but I can't tell where. Why'd didn't you include a link for attribution?

As for your assertion that "If you look at the diagnostic requirements, autism will be quite obvious to everyone in multiple contexts" - that is simply false. Most people are not qualified to identify autism. Many people tell us they never would have noticed my child is autistic, but she meets every single one of the criteria and has displayed symptoms since infancy. People have certain perceptions of what autism is, often based on older definitions. That is irrelevant to the fact that my child has real support needs and is asking well precisely because she has supports.

Last sentence should read "That is irrelevant to the fact that my child has real support needs and is doing well precisely because she has supports"

[Anonymous]

Anonymous wrote:Since neither parent is presumably a specialist at diagnosing SN, we deferred to the experts. The real issues for parents arise when the experts are saying X but one or both parents believe that their own parenting 'intuition" supersedes, and conflicts, with the diagnosis of the clinician(s). If there is a conflict like this the tendency of parents is to "wait and see" which is the death knell for the hopes and chances of remediation. SN can be remediated when treated aggressively while the child is young. So therein lies the problem. Anecdotally, I nearly divorced DH. I had to say to him in a final showdown: I am on Planet Reality with the doctors. You are on Planet Denial by yourself. I'm not there. Your parents aren't there. The school isn't there. The clinicians aren't there. You are all by yourself on your planet. Either take a rocket and fly to our planet or I will call my lawyer to blow up your rocket for good. That did it. We have stayed married 13 years since then and he is supportive and on board.

SN cannot be “remediated” like that. By definition.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Since neither parent is presumably a specialist at diagnosing SN, we deferred to the experts. The real issues for parents arise when the experts are saying X but one or both parents believe that their own parenting 'intuition" supersedes, and conflicts, with the diagnosis of the clinician(s). If there is a conflict like this the tendency of parents is to "wait and see" which is the death knell for the hopes and chances of remediation. SN can be remediated when treated aggressively while the child is young. So therein lies the problem. Anecdotally, I nearly divorced DH. I had to say to him in a final showdown: I am on Planet Reality with the doctors. You are on Planet Denial by yourself. I'm not there. Your parents aren't there. The school isn't there. The clinicians aren't there. You are all by yourself on your planet. Either take a rocket and fly to our planet or I will call my lawyer to blow up your rocket for good. That did it. We have stayed married 13 years since then and he is supportive and on board.

SN cannot be “remediated” like that. By definition.

What definition? Obviously, "SN" includes a lot more than autism. For example, selective mutism can absolutely be completely remediated.

[Anonymous]

Anonymous wrote:I mean, not every lump is cancer. Not every fever is the flu. But that doesn't mean the person identifying the symptom is imagining it. And it doesn't mean they are wrong to have it checked out. That's where the low-intervention parents go wrong. They're missing an opportunity to identify and treat what might be a serious problem. And then if it turns out not to be, they claim they were right all along and belittle the intervening parent. But the intervening parent was never wrong to have identified a possible issue.

NP. And I have had both a basal cell carcinoma and am currently being seen for melanoma.

My DC has been diagnosed with ASD. It was a real issue in elementary school and that's when we got the neuropsych eval and services from the school. Now, in high school, he has a 504 but it doesn't do much beyond alerting his teachers. Does he still have ASD, yes, but it really is much more minor now. Will this change again in the future? Possibly, who knows?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Since neither parent is presumably a specialist at diagnosing SN, we deferred to the experts. The real issues for parents arise when the experts are saying X but one or both parents believe that their own parenting 'intuition" supersedes, and conflicts, with the diagnosis of the clinician(s). If there is a conflict like this the tendency of parents is to "wait and see" which is the death knell for the hopes and chances of remediation. SN can be remediated when treated aggressively while the child is young. So therein lies the problem. Anecdotally, I nearly divorced DH. I had to say to him in a final showdown: I am on Planet Reality with the doctors. You are on Planet Denial by yourself. I'm not there. Your parents aren't there. The school isn't there. The clinicians aren't there. You are all by yourself on your planet. Either take a rocket and fly to our planet or I will call my lawyer to blow up your rocket for good. That did it. We have stayed married 13 years since then and he is supportive and on board.

SN cannot be “remediated” like that. By definition.

What definition? Obviously, "SN" includes a lot more than autism. For example, selective mutism can absolutely be completely remediated.

Ask yourself why parents with kids who will never be “remediated” might be irritated with you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Since neither parent is presumably a specialist at diagnosing SN, we deferred to the experts. The real issues for parents arise when the experts are saying X but one or both parents believe that their own parenting 'intuition" supersedes, and conflicts, with the diagnosis of the clinician(s). If there is a conflict like this the tendency of parents is to "wait and see" which is the death knell for the hopes and chances of remediation. SN can be remediated when treated aggressively while the child is young. So therein lies the problem. Anecdotally, I nearly divorced DH. I had to say to him in a final showdown: I am on Planet Reality with the doctors. You are on Planet Denial by yourself. I'm not there. Your parents aren't there. The school isn't there. The clinicians aren't there. You are all by yourself on your planet. Either take a rocket and fly to our planet or I will call my lawyer to blow up your rocket for good. That did it. We have stayed married 13 years since then and he is supportive and on board.

SN cannot be “remediated” like that. By definition.

What definition? Obviously, "SN" includes a lot more than autism. For example, selective mutism can absolutely be completely remediated.

Ask yourself why parents with kids who will never be “remediated” might be irritated with you.

Why are you trying to speak for these parents? Speak for yourself. If a child's disability can be remediated that is a good thing. If you are so bitter that you don't want anyone else's child child to ever experience less impairment because your child is not in that situation, there is truly nothing I can do to make you feel better. My child exists and has a right to exist and is not an affront to you or your child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Since neither parent is presumably a specialist at diagnosing SN, we deferred to the experts. The real issues for parents arise when the experts are saying X but one or both parents believe that their own parenting 'intuition" supersedes, and conflicts, with the diagnosis of the clinician(s). If there is a conflict like this the tendency of parents is to "wait and see" which is the death knell for the hopes and chances of remediation. SN can be remediated when treated aggressively while the child is young. So therein lies the problem. Anecdotally, I nearly divorced DH. I had to say to him in a final showdown: I am on Planet Reality with the doctors. You are on Planet Denial by yourself. I'm not there. Your parents aren't there. The school isn't there. The clinicians aren't there. You are all by yourself on your planet. Either take a rocket and fly to our planet or I will call my lawyer to blow up your rocket for good. That did it. We have stayed married 13 years since then and he is supportive and on board.

SN cannot be “remediated” like that. By definition.

What definition? Obviously, "SN" includes a lot more than autism. For example, selective mutism can absolutely be completely remediated.

Ask yourself why parents with kids who will never be “remediated” might be irritated with you.

Why are you trying to speak for these parents? Speak for yourself. If a child's disability can be remediated that is a good thing. If you are so bitter that you don't want anyone else's child child to ever experience less impairment because your child is not in that situation, there is truly nothing I can do to make you feel better. My child exists and has a right to exist and is not an affront to you or your child.

It’s not a disability if it can be remediated. Hope this helps!