The Mislabeled Child--What do you think about the chap on autism?

[popmom]

To quote the book:

 

"In fact, children who lack serious deficits in their ability to understand (or empathize with) the emotional life of others, their desire to "affiliate" with (or be with) others, and their desire to imitate (or be like) other should not be considered autistic."

 

Some of you may have read my previous posts on my youngest dd. I won't rehash all the details. I just want to know if this is accurate. If it is, then I don't need to pursue evaluations for hfa for her. In spite of all her quirks, meltdowns, hand flapping, sometimes not being able to self regulate emotions, she does NOT have serious deficits in those 3 areas.

 

I admit I'm a ittle confused. I've read Aspergirls. I read a good bit online. There seems to be some contradiction. I'm really, truly happy at the thought of her not being labeled hfa, but I do want to help her be her best. I want to know how to help her when she's struggling. Maybe that means we just find a good counselor, and get some good old fashioned therapy together.

[itsheresomewhere]

Soapbox-

 

There is nothing wrong with a "label".  That "label" can open doors.  It can make testing accommodations for SATs, ACTs, etc.  As a parent to one with multiple "labels" I am grateful for them.  It explains so much.  So please, don't think of it as a "label" but as a key/tool for opening doors that need that key.  It is a diagnosis just like high blood pressure, diabetes, etc.  

 

Soapbox off

 

When your gut is telling you that you need to look further, then listen.  Based on your posts, I think and see the need for testing.  

Edited February 2, 2017 by itsheresomewhere

[PeterPan]

It has been a while since I read (scanned, perused, rabbit on speed, not really detailed reading) Mislabeled Child. I will point out that the Eides are kind of controversial on their take with the DSM. They have a loose interpretation of dyslexia. They're willing to unlabel kids with ASD because they find the kids also have dyslexia. In their theory (and research) the two can't co-exist, so they flat out say they can't, don't, blah blah, and that they undiagnose those kids previously diagnosed as ASD and reconclude them as (pick something else, probably ADHD with social delays). We have multiple, multiple people here on the boards diagnosed with both ASD and dyslexia. This is not a small controversy to some of us, and I really LOVE it when people read the Eides' book and say see, can't be autism cuz the Eides said so. ;)

 

So think through that. The kid is still the same. Good psychs can disagree. But an ASD diagnosis is not about biology. In reality, it's about FUNDING. It's about access to services and funding. So you REALLY want to decide the funding and access for your dc for necessary services based on a line in a book??  I don't. 

 

I really like some of what the Eides have done. But they're very willing to redefine things. That's fine in their world, but I need funding for my ds to have access to services. Doesn't help me one bit to lose an ASD label. We GAIN services and funding with that label. My kid is the same, and yes some kids, especially in that ASD level 1 range, will do different ways with different psychs. And that book was probably written during DSM4, not DSM5. That really matters! The entire definition of ASD changed. Biology didn't change, but the definition changed for legal purposes.

 

So think hard. You need access to services. You want clear evals with all the input you can get so people can put it all on the line, interpret it as fairly as they can in the moment, and give you advice and good help. And no, I would not conclude someone's ASD status based on one line in one book. It's WAY too important to reduce it to that. There's a lot that affects how you interpret that statement by the Eides. If I let my ds withdraw (his autism), he's TOTALLY DIFFERENT in regards to that sentence than he is when we're having a lot of success connecting with him. And it takes just a day, a few hours for that to happen. So that's a crap simplistic way to approach things, to take the SUCCESS OF HOMESCHOOLING and say see, your kid doesn't have autism. What baloney. Your dc is the beneficiary of virtual constant ABA. Not really, but in a way. IF she has ASD, her success and strengths reflect what you've been doing with her. It's absolute whooey to look at those successes and say therefore can't be autism. Of course she can still have autism. That's why you do evals.

Edited February 2, 2017 by OhElizabeth

[popmom]

Soapbox-

 

There is nothing wrong with a "label".  That "label" can open doors.  It can make testing accommodations for SATs, ACTs, etc.  As a parent to one with multiple "labels" I am grateful for them.  It explains so much.  So please, don't think of it as a "label" but as a key/tool for opening doors that need that key.  It is a diagnosis just like high blood pressure, diabetes, etc.  

 

Soapbox off

 

When your gut is telling you that you need to look further, then listen.  Based on your posts, I think and see the need for testing.  

You have every right to get on your soapbox. I hope I didn't offend you by saying that--certainly wasn't my intention.

 

It has been a while since I read (scanned, perused, rabbit on speed, not really detailed reading) Mislabeled Child. I will point out that the Eides are kind of controversial on their take with the DSM. They have a loose interpretation of dyslexia. They're willing to unlabel kids with ASD because they find the kids also have dyslexia. In their theory (and research) the two can't co-exist, so they flat out say they can't, don't, blah blah, and that they undiagnose those kids previously diagnosed as ASD and reconclude them as (pick something else, probably ADHD with social delays). We have multiple, multiple people here on the boards diagnosed with both ASD and dyslexia. This is not a small controversy to some of us, and I really LOVE it when people read the Eides' book and say see, can't be autism cuz the Eides said so. ;)

 

So think through that. The kid is still the same. Good psychs can disagree. But an ASD diagnosis is not about biology. In reality, it's about FUNDING. It's about access to services and funding. So you REALLY want to decide the funding and access for your dc for necessary services based on a line in a book??  I don't. 

 

I really like some of what the Eides have done. But they're very willing to redefine things. That's fine in their world, but I need funding for my ds to have access to services. Doesn't help me one bit to lose an ASD label. We GAIN services and funding with that label. My kid is the same, and yes some kids, especially in that ASD level 1 range, will do different ways with different psychs. And that book was probably written during DSM4, not DSM5. That really matters! The entire definition of ASD changed. Biology didn't change, but the definition changed for legal purposes.

 

So think hard. You need access to services. You want clear evals with all the input you can get so people can put it all on the line, interpret it as fairly as they can in the moment, and give you advice and good help. And no, I would not conclude someone's ASD status based on one line in one book. It's WAY too important to reduce it to that. There's a lot that affects how you interpret that statement by the Eides. If I let my ds withdraw (his autism), he's TOTALLY DIFFERENT in regards to that sentence than he is when we're having a lot of success connecting with him. And it takes just a day, a few hours for that to happen. So that's a crap simplistic way to approach things, to take the SUCCESS OF HOMESCHOOLING and say see, your kid doesn't have autism. What baloney. Your dc is the beneficiary of virtual constant ABA. Not really, but in a way. IF she has ASD, her success and strengths reflect what you've been doing with her. It's absolute whooey to look at those successes and say therefore can't be autism. Of course she can still have autism. That's why you do evals.

 

Thanks for your perspective. I agree with you both...(I think??) I second guess myself all the time. I take this very seriously. I do think that this book over simplifies ASD, but I felt like it was important for me to get someone else's opinion on it before making my own conclusion.

Edited February 2, 2017 by stephensgirls

[OneStepAtATime]

The Mislabeled Child is an older book and I think a lot of people would agree it oversimplifies and is somewhat inaccurate regarding the ASD chapter in particular.  It is a good overall book for getting parents thinking and helping them start to seek answers but I do not see that book as the be all and end all of information.  I used it as a basic jumping off point as I was navigating the early days of trying to figure out what was happening with my kids but that was all.  Don't get me wrong, I am very grateful for that book and for the Eides in general.  Mislabeled Child and Dyslexic Advantage finally got me asking the right questions of mostly the right people.  As with anything in this area, though, nothing is perfect, nothing is set in stone and our knowledge base and understanding change frequently.

 

If you feel there is something going on with your child that is making life more challenging, but you cannot really get a handle on what, or how to address it, getting an evaluation can help.  I don't say WILL help because it doesn't always net answers.  However, it very well might give you the answers you need.  

 

I did not get my kids evaluations for a label.  Sadly, fear of a label is what kept my mother and husband pushing me NOT to get evaluations.  What I needed were answers.  Finally getting evaluations gave me answers, and gave me better questions, which gave me more answers.  And THAT put us on a much more productive and healthy path.  I don't care about the label.  I care about understanding my kids and helping them navigate and prepare for their futures.  Evaluations gave us a better path.

 

I hope that makes sense and helps in some way.  Best wishes.

Edited February 2, 2017 by OneStepAtATime

[popmom]

 

 

I hope that makes sense and helps in some way.  Best wishes.

 

Definitely helps. Thank you. What happened to me is... I read the chapter and thought, "if this is the diagnostic criteria, then I'm wasting my time and money. I'm going to get blown off." I can't let that fear stop me from getting some answers.

 

[PeterPan]

You have every right to get on your soapbox. I hope I didn't offend you by saying that--certainly wasn't my intention.

 

 

Thanks for your perspective. I agree with you both...(I think??) I second guess myself all the time. I take this very seriously. I do think that this book over simplifies ASD, but I felt like it was important for me to get someone else's opinion on it before making my own conclusion.

 

I don't think the ASD question is something you'll conclude easily. You may find that it takes several evals, several concurrent opinions, before you really have peace with the conclusion. Our first psych blew me off and said ADHD-inattentive (clearly incorrect!) with social delay. It didn't seem right to me but I tried to roll with it. Others who knew were astonished. Two more psychs later and we finally had more time, more forms filled out, more observations, and just enough data to get some people agreeing what they were seeing.

 

Some kids are complex. I think it's ok not to be sure. You might not be sure even after some evals. But you can take some steps, get some interventions going. If you think there's something going on, there's something going on. 

[PeterPan]

DSM-5 Diagnostic Criteria | What is Autism?/Diagnosis | Autism Speaks

 

Fwiw, I found the chart at the bottom of this link very helpful. It helps you see the difference between ASD1, 2, and 3. It helps explain why kids can have ASD and be very different. The support levels and how it presents will just be very, very different in the levels. When that Eide book was written, there were not the levels. They parsed off with different diagnoses. Now everything is combined and ASD has levels. Notice which levels become obvious to casual observers.

Edited February 2, 2017 by OhElizabeth

[Crimson Wife]

It has been a while since I read (scanned, perused, rabbit on speed, not really detailed reading) Mislabeled Child. I will point out that the Eides are kind of controversial on their take with the DSM. They have a loose interpretation of dyslexia. They're willing to unlabel kids with ASD because they find the kids also have dyslexia. In their theory (and research) the two can't co-exist, so they flat out say they can't, don't, blah blah, and that they undiagnose those kids previously diagnosed as ASD and reconclude them as (pick something else, probably ADHD with social delays). We have multiple, multiple people here on the boards diagnosed with both ASD and dyslexia. This is not a small controversy to some of us, and I really LOVE it when people read the Eides' book and say see, can't be autism cuz the Eides said so. ;)

 

:iagree: :iagree: :iagree: :iagree:

 

I know that the Eides make the claim that ASD and dyslexia are "opposites" in the brain but the mainstream consensus is that 30-40% of kids with ASD have co-morbid dyslexia.

[PeterPan]

:iagree: :iagree: :iagree: :iagree:

 

I know that the Eides make the claim that ASD and dyslexia are "opposites" in the brain but the mainstream consensus is that 30-40% of kids with ASD have co-morbid dyslexia.

 

Wow, that's astonishing. I hadn't seen that number. And I think it's important, because the DSM ASD diagnosis is NOT biologically based, not driven by MRIs or science of any kind. It's all made up anyway based on men in a room and symptoms observed. And EVERYONE KNOWS things overlap. So they've clumped together lots of subtypes and problems and it's just such, such hooey to say oh we did MRIs on 12 people (yes, read the study report, was it 12??) and therefore we KNOW about the ENTIRE EXTENT of autism and how it presents in the brain.

 

Anybody who is missing that many cogs knows diddley about autism, no matter how many phds are behind their name.

 

I actually agree with them that it's way more complex and that they're onto something. But until they've gotten lots more MRIs, and gotten them across all the subtypes and severity levels that ARI is finding, I just think it's absurd, absolutely absurd, to say that their study with just a few people is telling us everything there is to know. There's just way too much variety in the ASD community, especially now with everyone lumped together and separated only by severity levels. Everybody KNOWS those are based on symptoms, not biology. 

SaveSave

Edited February 2, 2017 by OhElizabeth

[Lecka]

I have not read it lately, but I thought that chapter had some parts in it that were dated.

 

I think autism has gotten broader in some ways, and that kids he excludes would be included now, bc of a different idea about what the diagnostic criteria should be.

 

I think it is maybe a 20-year-old book by now.

 

I do like that book a lot. But I think it would not be my book for autism diagnosis.

 

It doesn't take away from other parts of the chapter or book, though!!!!

 

But views have changed and what I hear called "high social motivation" or something can be part of autism. It is not considered a reason to rule it out anymore.

 

I think bc it is seen or viewed now that someone with high social motivation can still have the same kinds of skill deficits associated with ASD.

 

It is a change.

 

I don't think he is wrong, I think it made sense at the time.

 

But now the field is in a different place.

 

And is that right or wrong? Should it be as this author says? Should things have worked out differently?

 

I think it makes sense for the diagnostic criteria to change and merge things into ASD, but I don't think it HAS to be this way, it could change again.

 

But I think for now for looking into autism resources -- I think autism resources are often very good.

[popmom]

DSM-5 Diagnostic Criteria | What is Autism?/Diagnosis | Autism Speaks

 

Fwiw, I found the chart at the bottom of this link very helpful. It helps you see the difference between ASD1, 2, and 3. It helps explain why kids can have ASD and be very different. The support levels and how it presents will just be very, very different in the levels. When that Eide book was written, there were not the levels. They parsed off with different diagnoses. Now everything is combined and ASD has levels. Notice which levels become obvious to casual observers.

Thank you for the link!

 

:iagree: :iagree: :iagree: :iagree:

 

I know that the Eides make the claim that ASD and dyslexia are "opposites" in the brain but the mainstream consensus is that 30-40% of kids with ASD have co-morbid dyslexia.

This could very likely describe my daughter. I hope to have some answers soon.

[popmom]

I don't think the ASD question is something you'll conclude easily. You may find that it takes several evals, several concurrent opinions, before you really have peace with the conclusion. Our first psych blew me off and said ADHD-inattentive (clearly incorrect!) with social delay. It didn't seem right to me but I tried to roll with it. Others who knew were astonished. Two more psychs later and we finally had more time, more forms filled out, more observations, and just enough data to get some people agreeing what they were seeing.

 

Some kids are complex. I think it's ok not to be sure. You might not be sure even after some evals. But you can take some steps, get some interventions going. If you think there's something going on, there's something going on. 

 

Thank you for this. It's not what I want to hear, but I know it's true. The process is daunting, but yes--I need to get some interventions going.

 

[kbutton]

I agree with all of this. My son has high social motivation, but he has trouble figuring out social stuff at the same time. The book helped us realize we had some sensory issues going on, and it got us moving, but it definitely does not reflect what the autism spectrum looks like in our home. Not at all.

 

I do like that book a lot. But I think it would not be my book for autism diagnosis.

It doesn't take away from other parts of the chapter or book, though!!!!

But views have changed and what I hear called "high social motivation" or something can be part of autism. It is not considered a reason to rule it out anymore.

 

[Janeway]

That is completely wrong. My 7 yr old will cry for others when he thinks they are sad. The other day, a song came on that I told my husband more than a week ago made me sad. And my son started crying and telling me he knew I was sad. 

 

The DSM is the authority on what the qualifiers of ASD are. Not some jerk who wrote whatever it is that you read.

[Guest]

Agreeing:

That is completely wrong. My 7 yr old will cry for others when he thinks they are sad. The other day, a song came on that I told my husband more than a week ago made me sad. And my son started crying and telling me he knew I was sad.

My 8 yr old wipes my tears gently with his finger tips and says "Don't cry, mommy!". Then gives me a hug. It is very rare for me to cry, so it's not like he has seen me more than maybe a few times in his life. Edited February 19, 2017 by Guest