New Definitions for ADD?ADHD?

It is not just misdiagnosis that leads to a delay in intervention. All the armchair developmental experts with their anecdotes about, "So-and-so's second cousin's next door neighbor's dog groomer had a half-step-brother who didn't talk until he was 7 and now he teaches at MIT." Or, "Oh that is just how boys are," and "When she is ready to talk she'll talk alright." And my favorites, "Well in my day we just weren't as permissive and my kid wouldn't have gotten away with acting like that period," and, "Obviously you need to spend more quality time with him/her. He/She just needs more attention/affection/love/discipline/a sibling/less TV/more activities/less activities...(fill in the blank)." And the pediatricians are no better with their patronizing little "Tut-tuts," and "Oh you mothers. You worry too much about every little thing." Of course I find their ignorance indefensible. They are docotrs who specialize in the care of children after all. As if parents aren't struggling enough when faced with these challenging kiddos. When they finally come to terms with the fact that something is afoot with their child, they get all these dismissive and even critical messages from the people around them, some of whom claim to love and support them!

Shue,

That's the best soap box speech I've read in a long time.

"Now, he's an adult, and it's too late."

Yep, and you mention the conduct disorders website.  In contrast to my above posts, I have to say that ODD and CD are scary dx for parents to hear, especially when they start reading and see that sociopathy is adult CD, basically.  I believe the sociopathic adult has to have shown symptoms of CD in childhood in order to be given the sociopathic label?  I think so.  However, only 30% of them grow up to be sociopaths, which means 70% do not.  This is why it is so important to get the correct dx and do the interventions. 

As a teacher, trying to convince a parent to put his/her child in a behaviors modification class was very difficult.  These classes have terrible reputations, yet some of the best special education teachers I have met were the ones who ran these classes.  I have seen children go into BMC classes, then be able to return to the regular classroom within a year and function very, very well.

You guys are absolutely right about EARLY intervention with these disorders. It is crucial that parents explore their child's diagnosis to be certain it is correct. So many autistic children miss out on proper treatment due to misdiagnosis.

Frankly, I am amazed at how far they have come at treating it. They are showing more and more cases where early intervention is making it possible for the children to function in the world on a pretty normal level. I am so glad you guys have gotten that.

Good Luck!

Well, one of my dd's could be dx'd AS and she is very social, hyper-social, but clumsy. And eye-contact is tricky to define. It is easy to spot poor eye-contact but what passes for good eye-contact is a lot harder to pin down.

My AS/ADHD dd does not pick up on social cues, but I see my ADHD nephew missing the same type of cues. For example, my Emma Jean has a social exchange that is successful with a child that entails blowing a party blower in each other's face so she decides to try it out on a different kid; she is visibly excited with this new overture. The new kiddo however doesn't like it and as an observer I can see the new kid demonstrate her disdain for the thing in her face very clearly. Emma Jean does not get this however and keeps at it until she is pretty harshly rebuffed by the other kid. My Emma Jean is crestfallen. She didn't get it until it was too late. She does however very much "get it," and her perfectionistic little self is absolutely defeated. With my nephew, I see him not "get" that some form of horseplay or practical joking has gone far enough or that the others are now tired of it. He keeps at it until he is outcast. Etc. My dd strives for social interraction. Is desparate for it, but cannot quite figure it out until a moment too late. Then if she does experience a succesful exchange, she is likely to reinitiate with the same person the next time they have the opportunity to interract in the exact same way. Her social atypicals are not easily identifiable at first. Even professionals have to spend some time with her before her veneer of normalacy begins to crack. She is aces at pretending to be normal. She is unique, but not so unique in the world of spectrum disorders.

At any rate, I was just asking about the inlcusion to see what veteran ADHD'ers and their loved ones thought about it. I appreciate your input.

Maybe, Spectrum Disorders needs to be broader?  I don't know. 

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That is what it appears they are doing, broadening the span of the spectrum umbrella. It may be a misplaced broadening. I don't know. My experience with ADHD is practically none so I couldn't say either way.

Well I hope that you'll share what your doc has to say on the matter. All I know is that in my experience, ASD is a very fluid dx up to a point. I mean despite what is widely generated, autism and autism spectrum disorders are treatable. Perhaps not "curable" in the traditional sense of the word, but people do recover to varying degrees. I guess part of the reason it seems plausible to me (and I am only a parent, not a professional by any stretch of the imagination) that ADHD and ADD could be part of the continum is because of the very high incidence of co-morbidity of spectrum disorders and ADD/ADHD.

Are you an educator?

My other dd was dx'd with moderate to severe autism in December '03. After 11 months of  various intensive intervention, she is no longer testing on the CARS at all. Her score dropped more than 12 points. At this time she could be described as "indistinguishable from her peers." Now, on the Vineland....well her adaptive skills get sketchy and she requires constant attention in several areas. She will not likely be able to maintain her indistinguishablility forever, LOL.  But unlike sis, she is less concerned about social stuff. The therapists that have worked with her cannot believe the turnaround. My husband and I are at turns delighted and in disbelief ourselves.

I have a spectrum disorder kid (PDD-NOS) and ADHD behavior is part of the symptoms, although certainly not the primary problem. ADHD rarely stands by itself and often other diagnoses are called ADHD maybe to make parents not freak out. My autistic son has really improved from his academics to his behaviors. He is off all meds and never rages or acts out at all anymore. My best friend's 28 year old son, who has never been able to hold a job in his life in spite of an IQ nearing the genuis level, was diagnosed with Aspergergers, and he is very typical---narrow interests, talking AT people not to them, tries to be friendly but very poor social skills, poor life skills, on disability, friend freaking about what will become of him after she's gone. He lived with an ADHD dx. until he was in his early 20's, and that just wasn't it. He doesn't "get it" whether it's social skills or life skills, but has more knowledge about many topics than most people, and speaks three languages. My PDD-NOS son appears friendly and helpful and plays in school, but rather play be himself at home. Autism Spectrum Kids are commonly misdiagnosed as ADHD/OCD as both ADHD behavior and OCD behaviros are common with these kids. Not all autistic kids can't make eye contact. My son can do it under certain conditions. I am not sure there is an ADHD spectrum. I think there is a strong denial from many parents when the problem is more than ADHD therefore some professionals are accompanying parents and calling things ADHD when they are really other disorders. Dr. Amen is a prime example. His ADHD VI is classic bipolar and is treated with mood stabilizers, but maybe parents feel better hearing "ADHD" rather than bipolar. It doesn't really matter as long as the kids are placed on mood stabilizers rather than stims. I hope they don't expand ADHD anymore than they already have---it's been stretched to the limit. Too many doctors call EVERYTHING ADHD---just passing the Connors test does NOT mean ADHD---as most bipolar kids and autistic kids will also pass it. Seems like stims are the rule of the day for any kids with behavior disorders. When it is appropriate for kids to be on stims, that's fine, but it scares me that some kids, who are described here, are put on stims. There's a lot more going on with a lot of them and stims can make other disorders even worse. Just my thoughts.

As a side note, my autistic son has really improved 100%, but, as he gets older, his differences from "typical" kids do stand out. You don't outgrow autism, but it can greatly improve.

I used to be an educator.  I taught for years, and I taught "remedial" education.  I was the last stop before a self-contained special ed class, so I have seen a lot of disorders.  After I quit teaching, I adopted a special needs child.  I tell you, no education prepares you for being the parent of a special needs' child!  It changes your whole perspective. 

I am so happy for the success you have had with your child!  Here's to a good diagnosis and proper treatment , and, remember, there's nothing wrong with being an introvert  .

"remember, there's nothing wrong with being an introvert  ."

Amen! I always said that I marched to the beat of my own drummer and had no medical explanation for it.

Although the more I learn about AS and how it looks on girls/women, the less random my children's differences seem to be. It is beginning to appear that these two little acorns didn't fall so far from the ol' tree after all.

I appreciate that you give a nod to the difference between parenting and teaching these kids. We have been blessed to have terrific therapists, but sometimes even the best of them fail to realize that a family does not operate in a clinical setting. I mean life happens and not always as a tidy little opportunity to record data and implement the perfect reinforcer. There is a child behind the particular set of behaviors they are remediating and a family behind that child, KWIM?

At any rate, I look forward to "hearing" what the doc has to say.

Keep fighting the good fight.

I am wondering too. Someone asked me about  differentiations when I spoke of my recently dx'd ADHD daughter.

Also, what do you veterans think about ADHD being included under the umbrella of spectrum disorders?

Shue, I have not heard this.  That's interesting.  I don't buy it, though.  The one thing that is significantly different is the social behavior of ADD/ADHD children and Spectrum Disorder children.  As I have said many times in these posts, my son is a social animal.  I have never met a Spectrum Disorder child who was.  The social behavior is something that is very marked about Spectrum Disorder in the children I have known--they have difficulty either making eye contact or sustaining it, they often have a lot of difficulty reading body language and don't know how to use it well in conversations, they seem very shy and socially uncomfortable in new situations, etc.  I don't see ADD/ADHD children like this, unless they have a comorbid condition. 

Now, I do believe children are diagnosed ADD/ADHD when they have another disorder altogether, and I wonder if bad diagnoses are more responsible for the links between the two.  Maybe, Spectrum Disorders needs to be broader?  I don't know. 

I think a lot of kids here aren't treatable because they have a lot more than ADHD. That's why I often recommend people go to a site that focues on not just ADHD, but all childhood disorders. I noticed we got a lot of new posters from this baord and diverse opinions go to each mother who posts there. There is more focus than just ADHD. A lot of parents won't face that it's more than ADHD until after it is too late and the child missed serious interventions. My best friend's 28 year old son just found out he has Aspergers. He is on Disability and can speak three languages, but could never hold a job for more than a few months because he doesn't "get it." Yes, he is very impulsive, but his 27 years of ADHD diagnosis just got wiped away. That is hardly his problem, and now his mother is terrified of what to do with him since she can't live forever and he can't manage life on his own, and likely never will. She is very angry at the doctors who yelled "ADHD" his entire life. Clearly it was much more. Now he's an adult and it's too late.

www.conductdisorders.com

Autism definately has a stigma and even within the autism community there are varying degrees of acceptence. My girls are so high functioning (NOW, I'd like to emphasize) that we are kind of outsiders within the ASD community and yet we sure as heck don't fit with the vanilla people either. It's isolating and frustrating at times.

I understand people not wanting to be included under the spectrum umbrella. So many people's understanding of autism is limited to the "Rainman" or some movie they saw on Lifetime once. There have been terms applied to my girls that made me bristle too. Of course, that did not make them inaccurate. And I am not being jerky about this. Goodness knows I have learned along the way just how judgemental I was of other people and their kids before I learning that my little family were citizens of our own corner of dysfunction junction.  Labels really only matter to the official types they matter to, at least in my estimation. I use them when I need to, but they rarely shape the expectations I have of my ladybugs or anyone else's, KWIM?But the science of the disorders is interesting to me so I will be curious to see how those white lab coats get it all worked out.

Regarding ADHD and the autism spectrum, many parents of kids with ADHD say they don't belong on the same spectrum, but many parents of kids with ASDs (autistic spectrum disorders) feel that ADHD does belong at the mildest end of the autism spectrum. 

In our case,  our son was diagnosed with ADHD/ODD and Sensory Integration Dysfunction last summer after he was suspended from our church's preschool for aggression and not participating in class, etc... He couldn't handle all the noise and chaos of the busy classroom.  (He now has an IEP and is a special class with only 5 other kids and he does GREAT!  He never has been on any meds.)  We went to a developmental pediatrician and a developmental psychologist this spring and they feel our son doesn't meet the criteria for ADHD or ODD anymore.  We wondered how he could "present" with those disorders last summer and "present" completely differently 9 months later.  The answer is:  he's now in an environment he can handle.  He was so overwhelmed in a regular classroom that he seemed totally impulsive and inattentive.  As soon as we removed him from the school he started to improve and we were able to get a clearer picture of what's going on with him.  Now he's diagnosed with Sensory Integration Dysfunction, a mild form of ASD and possible auditory processing deficits.  (We're getting a third opinion starting tommorow, so we'll see if the dxs change again!)

The OASIS website discusses how ADHD symptoms fit in with an ASD diagnosis.  There's much overlap.  And to further complicate things, they can be comorbid.  ADHD is diagnosed in a child with an ASD when the symptoms of ADHD are more than they would be in most kids with ASDs.  At least, that's my understanding.

I think more research needs to be done as to the causes of ADHD and ASDs before we know for sure if these disorders are related.  But it's interesting that parents of kids with ADHD tend to feel differently than parents of ASD kids about this issue.  Perhaps it's in part due to the stigma of the word autism.  I know for us, I had a much harder time accepting a possible ASD dx.  I much preferred just plain ol' ADHD! 

It is very confusing for us parents when they keep changing definitions and names of disorders.  And it makes it even harder to get our kids the help they need in school and through insurance companies as well.  It'll be great when this whole field has some solid answers for us. 

Sorry to ramble on!

Danielle