Reply to Sharing an ASD dx with child when you're not sure if you buy it

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]A lot of parents in this thread are saying it's fine to wait to tell.

Our daughter was diagnosed at 11 yo and because we were not sure we agreed with the diagnoses and because it was during a weird time with covid, we waited a year to tell her.

Our daughter is still upset with us over this because she feels the diagnosis explains a lot of things about herself that she was blaming herself for.  It gave her a certain freedom and acceptance of herself.  My daughter says, "it really affects your perception of yourself and allows you to be easier on yourself, to know the diagnosis.  And it's not the sort of information you can keep to yourself -- it profoundly impacts the experience of your child.  The longer you wait, the worse it will be -- for yourselves and for your child -- when your child does find out.  It is your child's right to know, and you should tell them now, you're not doing yourself or your child any favors by keeping it a secret.  It's a very common experience for people getting an ASD diagnosis to feel a weight lifted off your chest, to know that you're not weird or deficient, but there's an explanation for your experience and feelings."

Just to go against the grain of all the other parents in here -- from a kid's perspective, my middle schooler would have preferred to know when we knew.[/quote]

Just re-posting my daughter's take on this, again, quoted above.  My daughter was attributing her lack of control over her emotions to a failing within herself, something other kids were able to manage but that she was deficient in.  She was released from this by knowing of her diagnosis and no longer blamed herself for having greater than usual difficulty in managing her emotions.  She read about ASD and saw where she fit into some parts of the spectrum and didn't fit into others.  Some things clicked for her.  If your kid is having emotional behaviors that fall outside what a lot of other kids are experiencing, it's possible that they are blaming themselves for these behaviors and see themselves, quietly, maybe without even telling you, as a big failure.  I don't want that for anyone's kid.  Sorry for taking the thread so personally, but it is a personal issue to my family given the experience we have had, and it's weird seeing so many people in this thread talk about actually having received both ADHD and ASD diagnoses for their kids and sharing the ADHD diagnosis but withholding the ASD diagnosis.  I see it as resulting from the internal stigma we as parents feel from the diagnosis, whereas for our kids it is actually helpful, freeing information.  But as we've all seen, ymmv.[/quote]

Pp - I applaud you bc this has obviously been the right step for your kid!
I do keep coming back to emotional regulation not being diagnostic of asd and thus I think that’s where you see people lean more toward sharing that adhd dx where emotional regulation is concerned with their dc. Adhd to be clear -  also removed emotional regulation deficits from the dsm - so it is also not diagnostic as of now, but it is part of the original adhd dx and a substantial cohort of experts including Russell Barkley who literally wrote the book on adhd consider it to be the hallmark attribute of adhd that should be reintroduced into the dsm. All that is to say I think if your core issue is emotional regulation with no obvious consistent connection to other issues (social/ external stimuli) then as a parent you would lean more toward adhd than asd typically as a first step especially if adhd is very apparent.  I think for asd I would expect to see the emotional regulation coupled with other issues. So it’s not so much a taboo (though I do agree with you that asd is still in a less understood space) as that emotional regulation as a principal driving issue is more associated with adhd than asd  [/quote]

I agree with both PPs here. I will say that I think that emotional regulation issues are more common in ASD among girls (or AFAB people) than boys since we tend to be more harsh on them when they don't conform. And with both genders there is the matter of difficulty with transitions and often that difficulty manifests in emotional meltdowns.

But yes, when we see emotional regulation issues our minds should go to ADHD before ASD. Something I learned from Dr. Barkley that was so enlightening to me is what emotional regulation difficulties look like in people with ADHD. He said that people with ADHD experience emotions that make sense because the emotion is triggered by an event that would cause that emotion in everybody, but they experience the emotion very intensely because of inhibition difficulties. The emotions also go away rather quickly. It's really interesting because my son who has ADHD clearly has these pretty extreme emotional reactions to things that upset him, but never because he was so absorbed in something that switching tasks causes severe emotional distress. When DD was younger and we told her she had to switch tasks, she screamed, hit herself, burst out in tears, and said she wanted to kill herself, and was like that for hours. [/quote]

That does not describe my daughter's experience with ASD.  Her emotional reactions have never been so extreme as to include hitting herself or screaming etc, and once they are over most of the time she is basically recovered from them, although I would not want to test it by stressing her out again right away.  She has also never had extreme emotional reactions because she didn't want to switch tasks.  Her reactions have generally come from getting stressed out from tests or work that is difficult for her, or one year from getting bullied from some boys at school.  And yet she has ASD.  And I accept that she is autistic.

I don't understand how people in this thread continue to say that emotional regulation problems are more associated with ADHD than ASD.  Has no one here ever seen an autistic child have an emotional breakdown because they became overwhelmed by some task?  I have seen this countless times with kids on varying ranges of the spectrum, yet according to this thread those breakdowns really point to ADHD rather than ASD, because you can't really trust the neurologist who diagnosed your kid because they're diagnosing everyone with ASD these days, and the diagnosis from a licensed neurologist isn't true unless you believe it yourself.  And I guess until then you should protect your child from even the possibility of thinking they might be autistic.

As one poster in here keeps saying, emotional reactions are not a diagnostic criteria for autism -- but neither are they for ADHD.  Yet over and over again in here folks who have kids diagnosed with both ADHD and ASD use the emotional overreactive part of their kid's behavior in support of this theory that their kid really just has ADHD where emotional overreactions are prevalent and not ASD where emotional overreactions are not (so they say), or are really stemming out of some other ASD locus.

Why won't OP share the other factors that caused the neurologist to diagnose their child with autism?  There is no way a neurologist delivered this diagnosis with no other support than lack of conversational back and forth over a limited time period.

I strongly advise many of you to consider whether, just perhaps, you might actually have autistic children, who would greatly benefit from knowing sooner rather than later that they are autistic.  Accepting this in my own child has allowed me to see what a hero she has been all along, all these years, when others have seen her as sweet but anxious and unable to control her emotions.  And it has given her the freedom to recognize herself as different and give herself permission to not try to fit in all the time.  As parents, we worried that the autism diagnosis would restrict her future, but its immediate effect, after some confusion at the start, has been *extremely liberating* to my child.  If you have an ASD diagnosis and are not sharing it because you think it doesn't apply or don't see how it can help your kid, I urge you to reconsider and to share the diagnosis, because this information is about your child, not about you, and your child deserves to know it.  Please, please believe me that they won't thank you later when they find out you withheld it.[/quote]

op - pp - absent all the questions around emotional regulation deficiencies, which as we keep saying is not currently diagnostic of adhd or asd (rightly or wrongly) - did you yourself or others in your child's life ever question her diagnosis? You seem very defensive of and insistent upon your decision but to me it's as simple as either you never questioned it and neither did they in which case it's OBVIOUSLY the right choice to tell her, or like me it didn't quite click for you or for the school/ other therapists and providers in your child's life but you told her anyway. If the second situation applies, you can surely understand how some of us might be stuck right? 
as i wrote above, the main issue that the provider noted was reciprocal conversation, a gap between 2 iq scores, kid told her some extravagant lie and was crossing and uncrossing his fingers while taking the iq test in her office ('stimming'). [/quote]

We questioned the diagnosis too and as I have said here actually waited a year (for various reasons some involving Covid lockdown and difficulty lining up counseling) to tell our daughter. And our daughter has told us firmly this was a mistake. I typed out her opinion on this question word for word on page 2. She wishes we had told her when we knew, and strongly feels that she deserved the information, and thinks any parents in here with an actual autism diagnosis who are withholding it from their child are making a mistake.

So yes I do totally understand where you started from because I did too. I am trying to explain to you my ending point, and how my daughter made me understand that we owe our kids the dignity of this knowledge about themselves.

My daughter was angry we held this info for a year with extenuating Covid circumstances. It has now been longer for that for your son. Please tell him. [/quote]

Well, as they say, when you know one person with autism, you know one person with autism.[/quote]

Okay, but OP asked, is my child going to have mental health problems?  What will be the consequence of not telling them if I'm not sure?  And I have an answer for her from personal experience, it's just not one she wants to hear.

Let's be clear:  the question of whether or not the child has autism was close enough that time and expense were made for an evaluation.  Close enough that a professional actually diagnosed him with it.  The child is stimming in a testing situation to relieve stress.  And yet it's been two years since the diagnosis and OP still hasn't shared it with him.  [/quote]

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