Tips for explaining to parents that their child does not have autism

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borne_before

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I have been having a examples of parents almost seeming disappointed when I tell them their child does not have autism. I usually explain that their kid does have some odd/weird behaviors and is a little quirky, but usually their social skills are excellent and they maybe get like a 3 on the ADOS-2. Usually the kids (often minor) behavioral challenges are behavioral or better explained by ADHD, lowish/borderline IQ, anxiety, etc.

It's annoying because it should be GOOD news.

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I purchased the book Feedback that Sticks: The Art of Effectively Communicating Neuropsychological Assessment Results early in my training - not sure if it would be a helpful resource but worth looking at! Mind you - I have not read it yet so I don't have much to say if it's worth the read.
 
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NSFW, however you can always tell them this.
 
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I wonder if it's like when you give feedback that someone doesn't have PTSD: you validate whatever problems they are having (or in this case their kid) and not having the "label" doesn't detract from their difficulties.
 
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I have run into the same thing, and have generally found that focusing on the positives in terms of their child's likely future trajectory can be helpful. Some important context to consider is that there are significantly more funding / program opportunities associated with an autism diagnosis, so the parents may be responding negatively to having those resources denied rather than having been wrong about their child's presentation. The angriest parent I ever dealt with had a kid with severe ADHD who had been diagnosed with autism at like 3 or 4 but who I evaluated at 11 and he definitely did not meet it (can't remember ADOS-2 rating, but it was not even close). Mom was furious about losing services. Finding out what, if any, alternate services their child may qualify for can help.
 
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One potential issue is that ASD= 20-30 hours per week of specific, generally effective services, whereas everything else = good luck finding anything that will help you. Parents know this- particularly for younger kiddos where they have been primed by EI or other such therapists. In essence, you are delivering "bad", if not confusing or ambiguous news. I almost always find it more difficult to not diagnose ASD.

In my feedback, I go over every area of development (maybe not physical, if there are no concerns), giving specific feedback and examples (including reviewing formal test results) regarding language, cognitive, social initiation, social responsiveness, play, and repetitive behaviors or interests. I then tie these things directly into why I did or did not offer an ASD diagnosis (or did offer another diagnosis, which is usually something like global delay, language delay, or social pragmatic communication disorder). I then- before getting into recommendations- ask if they feel I've accurately described their child. If not, we try to figure out where the discrepancy lies and come up with a plan for closing that gap (such as additional testing, come back in 3 or 6 months, etc. I also am not too proud to give a general sense of how certain I am about not making a diagnosis (for example, I may say that I like to be 95% sure that it's not ASD, but in this case I'm only 75% sure). If I'm less than 90% sure, there WILL be a plan for further check-in/assessment after 3-6 months of continued services WITH the addition of anything I recommend.

I also feel that, if a parent has brought their kiddo to me, there is something not going right and something needs to change. Coming up with a diagnostic label is secondary to identifying needed services. That's often a referral to speech therapy (or more intensive speech therapy), recommendations for SPECIFIC and empirically validated social skills instruction, or accessing any behavioral/mental health services that might be needed. There is always a specific action plan with objective and measurable steps that I can evaluate when I see the kiddo again. Even if it's something as simple as "call the insurance company for a list of providers, and then contact me if you have any difficulties finding appropriate services"- having a specific plan can temper some of the confusion and uncertainty.
 
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I have run into the same thing, and have generally found that focusing on the positives in terms of their child's likely future trajectory can be helpful. Some important context to consider is that there are significantly more funding / program opportunities associated with an autism diagnosis, so the parents may be responding negatively to having those resources denied rather than having been wrong about their child's presentation. The angriest parent I ever dealt with had a kid with severe ADHD who had been diagnosed with autism at like 3 or 4 but who I evaluated at 11 and he definitely did not meet it (can't remember ADOS-2 rating, but it was not even close). Mom was furious about losing services. Finding out what, if any, alternate services their child may qualify for can help.
The perils of tying tangible benefits to a diagnostic label.

The only thing you can do is strive to remain principled and communicate what you believe to be true (and avoid telling the lie that you know they want to hear but that you know would be a lie if you told it to them). The challenge is compounded by the reality that we're dealing with assessing the presence/absence of, basically, working hypotheses (DSM-5 Diagnoses) which are theoretical constructs and that we deal more often in clinical practice with probabilities rather than certainties. In such complex decisionmaking environments (especially with limited data), I may not be certain of what 'the truth' absolutely is...but I know when I'm lying, that is, telling someone what they clearly want to hear even though I don't really believe it in order to avoid aversive consequences. I decided--long ago, mainly for self-preservative reasons--that I will never consciously lie/deceive my veteran patients in the VA system, even if it seems like a lie that they want to hear. Has worked out fine so far.
 
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As opposed to an ASD dx being "BAD" news?
I get what you're saying - probably should have said that ADHD tends to be far less impairing than autism an that is GOOD news.

That sent me down a bit of a rabbit hole in examining how to quantify that. So I looked that the disability adjusted life years (DALYs) of ADHD and ASD.

  • Attention-deficit/hyperactivity disorder (ADHD) resulted in 1·03 million (95% UI 0·58–1·74) global DALYs in 2019. ADHD contributed to 0·8% (0·5–1·4) of DALYs for the aggregate of mental disorders.
  • Autism spectrum disorders (ASD) resulted in 4·31 million (95% UI 2·82–6·23) global DALYs in 2019, equivalent to 0·2% (0·1–0·2) of DALYs. ASD contributed to 3·4% (2·7–4·3) of DALYs for the aggregate of mental disorders.
So ASD appears to have about 4x more DALYs despite being far less prevalent...
 
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Does anyone have a similar issue with telling parents that their kid doesn't have PTSD? I seem to frequently have parents asserting that their kid has PTSD because they were occasionally bullied (nothing even remotely approaching a criterion A event) in elementary school, and seem to be incensed with the idea that what their kid actually has is social anxiety disorder.

(what I'm really complaining about here is how lightly the word "trauma" gets thrown around)
 
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Does anyone have a similar issue with telling parents that their kid doesn't have PTSD? I seem to frequently have parents asserting that their kid has PTSD because they were occasionally bullied (nothing even remotely approaching a criterion A event) in elementary school, and seem to be incensed with the idea that what their kid actually has is social anxiety disorder.

(what I'm really complaining about here is how lightly the word "trauma" gets thrown around)

They may think the PTSD validates the child’s experience, and if we give another diagnosis that we are saying that the child didn’t go through something difficult.
 
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They may think the PTSD validates the child’s experience, and if we give another diagnosis that we are saying that the child didn’t go through something difficult.

That's definitely part of it. I think "trauma" has become a word for anything upsetting, and it seems invalidating to the parents because it feels like I'm suggesting that their experience wasn't difficult. I also wonder if there's some cognitive dissonance; it's much easier to blame their kid's issues on something like bullying than think that maybe the real issue is that the kid has internalized the parents' relentless criticism...
 
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That's definitely part of it. I think "trauma" has become a word for anything upsetting, and it seems invalidating to the parents because it feels like I'm suggesting that their experience wasn't difficult. I also wonder if there's some cognitive dissonance; it's much easier to blame their kid's issues on something like bullying than think that maybe the real issue is that the kid has internalized the parents' relentless criticism...
We’re def at peak trauma.
 
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That's definitely part of it. I think "trauma" has become a word for anything upsetting, and it seems invalidating to the parents because it feels like I'm suggesting that their experience wasn't difficult. I also wonder if there's some cognitive dissonance; it's much easier to blame their kid's issues on something like bullying than think that maybe the real issue is that the kid has internalized the parents' relentless criticism...

Yeah, trauma is the cool new thing to identify with. Though, as discussed in other threads, criterion creep has been an issue for some time. The term "trauma" will likely become somewhat meaningless in the near future.
 
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That's definitely part of it. I think "trauma" has become a word for anything upsetting, and it seems invalidating to the parents because it feels like I'm suggesting that their experience wasn't difficult. I also wonder if there's some cognitive dissonance; it's much easier to blame their kid's issues on something like bullying than think that maybe the real issue is that the kid has internalized the parents' relentless criticism...

Yup, that's the same thing we get in the VA. People generally assume that it's PTSD or nothing, not that there are a number of other reactions people can have and that a stressor doesn't have to be traumatic to cause issues. I always explain that PTSD is a VERY specific set of symptoms caused by a VERY specific type of event, and just because you don't meet that specific pattern doesn't mean that you didn't experience something very upsetting that is still causing you problems.

Of course, I've still had people angrily storm out of my office.

There's also this assumption that deployment to a war zone = automatically trauma because you're constantly in danger, even if you didn't experience any actual combat incidents. I mean, I get that line of thinking, but it also blurs criterion A too much for my comfort.
 
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Yup, that's the same thing we get in the VA. People generally assume that it's PTSD or nothing, not that there are a number of other reactions people can have and that a stressor doesn't have to be traumatic to cause issues. I always explain that PTSD is a VERY specific set of symptoms caused by a VERY specific type of event, and just because you don't meet that specific pattern doesn't mean that you didn't experience something very upsetting that is still causing you problems.

Of course, I've still had people angrily storm out of my office.

There's also this assumption that deployment to a war zone = automatically trauma because you're constantly in danger, even if you didn't experience any actual combat incidents. I mean, I get that line of thinking, but it also blurs criterion A too much for my comfort.
In terms of patients wanting/demanding certain diagnoses...it certainly doesn't help that our organizational systems are continuing to 'pile on' additional tangible/financial benefits to having these particular diagnoses. The newest thing in the VA is now they are apparently going to consider PTSD-related (external) avoidance to be a 'mobility issue' and, thus, will classify the service dog as a medically necessary 'prosthetic' to support mobility and then the VA will buy/provide veterinary insurance (for free)--which is a HUGE financial benefit over the lifetime of a dog.

 
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In terms of patients wanting/demanding certain diagnoses...it certainly doesn't help that our organizational systems are continuing to 'pile on' additional tangible/financial benefits to having these particular diagnoses. The newest thing in the VA is now they are apparently going to consider PTSD-related (external) avoidance to be a 'mobility issue' and, thus, will classify the service dog as a medically necessary 'prosthetic' to support mobility and then the VA will buy/provide veterinary insurance (for free)--which is a HUGE financial benefit over the lifetime of a dog.


Apparently the Welfare Queens of the modern age wear combat boots, branch hats, and are lead around by vested dogs.
 
In terms of patients wanting/demanding certain diagnoses...it certainly doesn't help that our organizational systems are continuing to 'pile on' additional tangible/financial benefits to having these particular diagnoses. The newest thing in the VA is now they are apparently going to consider PTSD-related (external) avoidance to be a 'mobility issue' and, thus, will classify the service dog as a medically necessary 'prosthetic' to support mobility and then the VA will buy/provide veterinary insurance (for free)--which is a HUGE financial benefit over the lifetime of a dog.


Yeah, don't get me started. It's especially weird because the study results actually didn't show a difference between ESAs and service animals for PTSD. Then again, it sounds like this is more political than clinical.
 
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Taking a u-turn back to the original post, I've had a few kiddos in the past weeks for whom I've told the parents both "I'm not diagnosing ASD" and "I'm pretty confident that this is ASD". Both were initially seen via zoom remote assessment, and the format masked the ASD symptoms enough were I did not feel confindent making a diagnosis. In both cases, it was relatively obvious during in-person assessment that ASD criteria were met.
 
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I get what you're saying - probably should have said that ADHD tends to be far less impairing than autism an that is GOOD news.

That sent me down a bit of a rabbit hole in examining how to quantify that. So I looked that the disability adjusted life years (DALYs) of ADHD and ASD.

  • Attention-deficit/hyperactivity disorder (ADHD) resulted in 1·03 million (95% UI 0·58–1·74) global DALYs in 2019. ADHD contributed to 0·8% (0·5–1·4) of DALYs for the aggregate of mental disorders.
  • Autism spectrum disorders (ASD) resulted in 4·31 million (95% UI 2·82–6·23) global DALYs in 2019, equivalent to 0·2% (0·1–0·2) of DALYs. ASD contributed to 3·4% (2·7–4·3) of DALYs for the aggregate of mental disorders.
So ASD appears to have about 4x more DALYs despite being far less prevalent...
I think a big part of this might be that ASD diagnoses tend to open the door to a lot more services and programs than do ADHD diagnoses. Also, ASD has the "super special savant" read in a lot of social discourse that ADHD tends not to have.

(On a side note, DALY is a horrible, actually ableist concept and metric, and I will die on that hill).
 
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(On a side note, DALY is a horrible, actually ableist concept and metric, and I will die on that hill).
I know! I just can't think of a better way to compare apples and oranges :)
 
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