Is ASD a useful label or is it we don’t know we will lump it under an umbrella term?

[Anonymous]

The more I read about ASD to try to understand it, the less it sounds like a specific disorder, to me it sounds like any unexplained developmental issue is being lumped into an umbrella term for lack of better explanation.

How is it that:
- No two people with ASD are alike. (I hear this alll the time)
- May have 1 or all of these flags and symptoms and behaviors vary soooo much.
- Different level of severity.

To me it just sounds like we do not have enough information about develompental disorders and they lumped it all together. I don’t believe ASD is a good diagnosis as it doesn’t really cover a single condition but a wide range of possible conditions. I get that’s it’s a “spectrum” but it varies so much that it doesn’t seem related. How can two vastly different children have the same digonsis? How is it even helpful if the conditions and treatments and outcomes and issues are so different. I think it would be more beneficial to have separate criteria and names/diagnosis for specific issues vs this umbrella term.

I am frustrated because the more I try to learn about it the less I understand or are able to get specific information on how it applies to my son. I find the label he was given rather useless as it doesn’t really point me in the right direction. I think more specific breakdowns would be helpful... it’s a social issue, a sensory issue, a language issue or whatever vs it’s ASD which can mean anything.

Does what I am saying even make sense?

[Anonymous]

Yes, it makes complete sense and complete agree.

[Anonymous]

Yes it makes sense. It is a very broad spectrum. There are two things to know:
1) All ASD involves social communication deficits. Usually this involves limited or no ability to pick up social cues. A lot of the variability in ASD is from this issue because it's like someone visiting a foreign country where they don't know the language. The visitor will act strangely, but it will look different depending on the customs of their own country.
2) All ASD involves restricted, repetitive behaviors. Narrow interests is classic, but this group includes sensory issues, as they try to confine themselves to seeking or avoiding certain sensations. For example, my kid eats only about 10 things, often refusing foods based on texture alone.

We don't know why those two items go together so often, but we see them together so often, we created the ASD syndrome. A syndrome is an set of symptoms that frequently occur together without an obvious connection.

The third thing to know is that ASD is often comorbid with other disorders. We don't know why this is either. But it accounts for a lot of the variability too. Many have ADHD, itself something of a spectrum. Many have communication disorders, adding a layer of complexity to understanding your AS kid..

I hope this helps.

[Anonymous]

What you said makes sense. And it’s hard when addressing teachers and administrators who don’t understand the nuances of ASD. They come with assumptions. I agree it’s more helpful to focus on specific deficits.

[Anonymous]

Yes focusing on deficits makes most sense

[Anonymous]

I think I agree with you. Add to that that the diagnostic standards are VERY different depending on where you go. I know kids who have ASD diagnoses who seem to have few challenges; and kids who went elsewhere and got no ASD diagnosis and have a lot of challenges in social skills, language, and behavior. I have also been told by service providers that there are definitely place you can go to "get" a diagnosis if that's what you want.

I think when it comes to high-functioning kids, it makes a lot more sense to focus on the missing skills, as opposed to the umbrella label.

[Anonymous]

Anonymous wrote:Yes it makes sense. It is a very broad spectrum. There are two things to know:
1) All ASD involves social communication deficits. Usually this involves limited or no ability to pick up social cues. A lot of the variability in ASD is from this issue because it's like someone visiting a foreign country where they don't know the language. The visitor will act strangely, but it will look different depending on the customs of their own country.
2) All ASD involves restricted, repetitive behaviors. Narrow interests is classic, but this group includes sensory issues, as they try to confine themselves to seeking or avoiding certain sensations. For example, my kid eats only about 10 things, often refusing foods based on texture alone.

We don't know why those two items go together so often, but we see them together so often, we created the ASD syndrome. A syndrome is an set of symptoms that frequently occur together without an obvious connection.

The third thing to know is that ASD is often comorbid with other disorders. We don't know why this is either. But it accounts for a lot of the variability too. Many have ADHD, itself something of a spectrum. Many have communication disorders, adding a layer of complexity to understanding your AS kid..

I hope this helps.

It actually doesn't make sense, because the DSM is very arbitrary. The standards for ASD (such as repetitive behavior) have changed. You used to not be able to diagnose ASD with anything comorbid, and now you say "ASD is often comorbid." It really is a moving target. ASD is a collection of symptoms, and the DSM criteria are so broad, that there's not really any unifying principal.

[Anonymous]

OP, I hear you.

Eight years ago, my just turned 7-year old son was diagnosed with Asperger's.

While it's been now folded into the ASD label you describe, we believe that the original diagnosis more accurately describes him (along with a previous diagnosis of ADHD), and will continue to use both.

As for his missing skills, they are a moving target and his therapies have changed over the years. I am glad we are not just starting out the path to diagnosis today.

[Anonymous]

The usefulness, for us, has been that the diagnosis gets us attention from the school district and access to therapies (through EI and paid for by our insurance) which have been helpful. I also believe that having the diagnosis helped us get a Katie Beckett waiver in DC. Theoretically, if all these institutions focused on deficits, we could come to the same result, but in my experience many insurance companies, school districts, and public service providers will try to wiggle out of expensive obligations and if you do not have a diagnosis of something serious, they will try to tell you your child doesn't need the service, is just avoiding work/being lazy/stubborn/poorly behaved etc.

Also using an umbrella term like "ASD" collects a bunch of stakeholders who can easily find each other and cooperate on shared goals. Those stakeholders could be people with the diagnosis, parents, researchers, institutions, etc.

[Anonymous]

How old is your child, OP?

When my child was first diagnosed with "high functioning autism" when he was 5, I felt the same as you. I didn't feel comfortable lumping my highly verbal, academically capable child with the picture of autism I had in my head.

Now that my child is older, I can see that he is, indeed autistic. His social communication deficits and his desire to engage in repetitive activities are more obviously restrictive. Yes, he's still very verbal and (sometimes) academically capable, but I can see how it's a difference in degree, not a different thing, from people who are classically autistic.

[Anonymous]

Anonymous wrote:I think I agree with you. Add to that that the diagnostic standards are VERY different depending on where you go. I know kids who have ASD diagnoses who seem to have few challenges; and kids who went elsewhere and got no ASD diagnosis and have a lot of challenges in social skills, language, and behavior. I have also been told by service providers that there are definitely place you can go to "get" a diagnosis if that's what you want.

I think when it comes to high-functioning kids, it makes a lot more sense to focus on the missing skills, as opposed to the umbrella label.

In less it is clear, kids really shouldn't get the diagnosis till 5-6 when things start to tease out. Obviously there are kids where its very clear but too many kids are labeled high functioning where they may have a little something going on but its not ASD. The labels are way to subjective and yes, you can doctor shop. Some docs like ours give it out freely as it pays for services, which takes a huge stress off the parents but then it can be inaccurate.

[Anonymous]

Imagine a lake. If youre on the shore, you're 'norm' whatever that is. If you're swimming, you're 'rain man'. My 11 YO daugher (fiiiiiinaly dx'd at age 9) has her feet in the water. Definitely there, some days you'd never know it. Some times it clear as day.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Yes it makes sense. It is a very broad spectrum. There are two things to know:
1) All ASD involves social communication deficits. Usually this involves limited or no ability to pick up social cues. A lot of the variability in ASD is from this issue because it's like someone visiting a foreign country where they don't know the language. The visitor will act strangely, but it will look different depending on the customs of their own country.
2) All ASD involves restricted, repetitive behaviors. Narrow interests is classic, but this group includes sensory issues, as they try to confine themselves to seeking or avoiding certain sensations. For example, my kid eats only about 10 things, often refusing foods based on texture alone.

We don't know why those two items go together so often, but we see them together so often, we created the ASD syndrome. A syndrome is an set of symptoms that frequently occur together without an obvious connection.

The third thing to know is that ASD is often comorbid with other disorders. We don't know why this is either. But it accounts for a lot of the variability too. Many have ADHD, itself something of a spectrum. Many have communication disorders, adding a layer of complexity to understanding your AS kid..

I hope this helps.

It actually doesn't make sense, because the DSM is very arbitrary. The standards for ASD (such as repetitive behavior) have changed. You used to not be able to diagnose ASD with anything comorbid, and now you say "ASD is often comorbid." It really is a moving target. ASD is a collection of symptoms, and the DSM criteria are so broad, that there's not really any unifying principal.

The "moving target" has a lot to do with the history of what the DSM is and the personalities of early Autism researchers. The ASD diagnostic criteria are pretty specific even if how individuals express those criteria seem broad. We see similar variance in expression of symptoms across other diagnoses where we know more about the underlying neurology.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes it makes sense. It is a very broad spectrum. There are two things to know:
1) All ASD involves social communication deficits. Usually this involves limited or no ability to pick up social cues. A lot of the variability in ASD is from this issue because it's like someone visiting a foreign country where they don't know the language. The visitor will act strangely, but it will look different depending on the customs of their own country.
2) All ASD involves restricted, repetitive behaviors. Narrow interests is classic, but this group includes sensory issues, as they try to confine themselves to seeking or avoiding certain sensations. For example, my kid eats only about 10 things, often refusing foods based on texture alone.

We don't know why those two items go together so often, but we see them together so often, we created the ASD syndrome. A syndrome is an set of symptoms that frequently occur together without an obvious connection.

The third thing to know is that ASD is often comorbid with other disorders. We don't know why this is either. But it accounts for a lot of the variability too. Many have ADHD, itself something of a spectrum. Many have communication disorders, adding a layer of complexity to understanding your AS kid..

I hope this helps.

It actually doesn't make sense, because the DSM is very arbitrary. The standards for ASD (such as repetitive behavior) have changed. You used to not be able to diagnose ASD with anything comorbid, and now you say "ASD is often comorbid." It really is a moving target. ASD is a collection of symptoms, and the DSM criteria are so broad, that there's not really any unifying principal.

The "moving target" has a lot to do with the history of what the DSM is and the personalities of early Autism researchers. The ASD diagnostic criteria are pretty specific even if how individuals express those criteria seem broad. We see similar variance in expression of symptoms across other diagnoses where we know more about the underlying neurology.

No, the ASD criteria are not specific. They are very broad, and in many potential combinations, that there is a lot of possible variety. The "moving target" is due to the inherently subjective nature of all DSM diagnoses -- they're decided by committee based on a collection of symptoms; not through actual differential, physically-based processes (or even treatment approaches.)

[Anonymous]

I agree with the OP. And, on the other hand, I can see how ASD is a useful label for mobilizing services. I sort of desire - and dont' want - this label for my child at the same time.

Our child received an ASD diagnosis in first grade along with that of 'specific learning disability' in reading and writing. He later received an ADHD diagnosis as well.

One year later, with his ADHD medicated, this same child has many friends and is one of the most popular children in his class. Very convincing and manipulative with family and friends as well. Lots of big emotions that he sometimes has trouble managing. Still ASD? I'm not sure based upon what a previous PP said about all ASD involving social communication deficits.....

This child does have sensory issues, attention issues, and some restricted interests (focus on transport for instance). Since he is only seven now, I am hoping the diagnosis or non-diagnosis of ASD will be clearer in the future. For now, we are addressing deficits: dyslexia, dysgraphia, poor gross motor skills, sensory issues. I'm holding out on addressing social skills more intensively because I think this might be a strength for him. But I recognize that I may regret this later.