i find it all very interesting, and it is still months away from release (may 2013) but i was just reading info on new dsm5 criteria for newly changed definition/criteria for ASD autism spectrum disorder, and also for the newly created SCD social communications disorder...

as i understand it, under new ASD, asperger's and ppd-nos dx's disappear, it is just all ASD, but it is divided into 3levels, it will mean less kids dx'd but it makes individualizing treatment for the kids more difficult. they are lumping it altogether and anyone with an autistic child knows- each child presents as a unique individual...

and kids who don't fit into ASD might fall into SCD but even that has specific criteria. this new dx of SCD makes the main treatment component the speech pathologist- and most school SLP are not on board with pragmatics.

*DS6is ASD, regressive autism @12mos, and was dx by private psych @3 as well as a school psych- same dx of autism. he was mostly nonverbal during these interviews, more so with the private psych,
however, the school psych did i think question dx? but the private psych in question was well established and esteemed child psych, so school went along with hers... this meant my DS rec'd services as needed through the school. not the highest quality but allowed me to spend $ in other areas of therapy.

now with the new dsm5 i realize right now, today, my DS does not fall into ASD or SCD- so he would receive no services from any source. however, back at age 3 with the signs/behaviors/lack of communication he exhibited- if being dx today with his 3yo signs? with new criteria, yes he would still fall under ASD.

but right now. today. no he would not be labeled.
so does this mean he no longer is autistic?
*and fancy thinking here- some are now questioning whether he was misdx as autistic when instead he may be profoundly gifted. i just know he is intelligient, learns easily, and enjoys it...he gets very bored with repetition of stuff he knows (hence his kinder woes!)
re-gifted. he hasn't been tested.

i think ultimately he is autistic, i accept it, i'm okay with it, and i think for most part- treating a gifted child's social communication issues is very much same as treatment has gone for my high functioning autistic boy... but maybe the gifted child would also be given more appropriate academic challenges at younger age than i did for my son?
i purposely didn't work on academics with my son,instead pushing social... he taught himself to read shortly before age 3. he could speak written words better than he could speak freely. he has full comprehension of what he reads.

but now i am reading even more on gifted kids misdiagnosed as autistic and the injustice and harm it can do to these kids, and i am seeing my child repeatedly in various child cases presented. i know that when my DS is with older kids, he fits right in, he prefers them, he says they understand him, he is bored with same age peers. yet most of his friends are same age because we don't know many older kids. *sigh*

i always go round in circles. a child can be autistic and be gifted. maybe i should be asking,
**how do your higher functioning autistic kids show their giftedness??
**how do their social challenges impede their daily life in the academic setting? (if they do at all)
(my son is NOT aspergers, and i want to focus more on the aut kids, there is tons of info available re gifted aspergers 2Ekids, but not for auts who are gifted. i'm also not talking savants here....

****a sidenote--
i recently pulled DS from public kinder and during his IEP on his last day of school (coincided with last day of semester), his teacher made him out to be a bright, ideal, even model student! (this of course impacted my trying to get new goals for him).the fact i pulled him because she wasn't teaching his level and he was bored and underchallenged-- undermotivated and therefore eventually withdrawing from even trying (including withdrawing socially) was glossed over by her as though it wasn't happening! and so now, i just rec'd his report card for the semester and she has him basically barely meeting kinder standards and showing little to no effort in all areas, she actually has him down as flunking art! how does a 5/6yo even flunk art? really? everyone is in agreement it is sourgrapes on teachers part... and i don't believe that this report card really impacts his future so i am not going to even address it. i am just very thankful that he is no longer under that womans tutelage 6.5hrs/day!! **oh- his new teacher assessed him to be end 1st/beg 2nd grade in all subject areas. and yes that means he does meet all kinder standards.

I find it confusing that you will hear some professionals say asd is (to some extent) treatable but incurable and the child will have it for life and then others "lose" their diagnosis. I am sure that some lose a diagnosis because they were misdiagnosed, but particularly with the high functioning I think it's not helpful to painstakingly teach skills and coping mechanisms and then, if the child learns to apply them,!say "Ta-da! Cured!". Having ways to manage a permanent condition and look normal in public comes with life long struggles other people don't have.

My son is 9 and has been a DYS since age 7. He is also autistic which was diagnosed when he was 2.5. He was nonverbal and fit the criteria perfectly. We immediately started ABA therapy and continued with speech and OT. He attended a school for kids with autism from age 3 to 5 and then started mainstream preschool. He has been in a public school for the gifted since he was in 2nd grade. (He's now in 4th.) He is "still" and always will be autistic. He thinks differently than the other gifted kids, even other PG kids. But he goes to a regular school (along with all the good and bad involved in that.).

Kindergarten was a disaster, but life for him has become easier with each subsequent grade. Despite having an IEP for his autism diagnosis, he had to go through detentions and suspensions. We've thought about homeschooling him...it would be easier than waiting for the school to call to inform us about another behavior infraction. Despite everything, he loves going to school. He gets supplemented academically at home, but we haven't had to supplement with outside therapies for a year.

My point is that PG-ness and autism do coexist. There is no "cure" for autism and I think it is hurtful to say there should be. Autistics don't communicate in the way other people want them to. There is a whole movement going on describing how important it is to allow different types of communication...support neurodiversity! Check out The Autcast, Karla's ASD page, Wrong Planet for example.

I know there is a whole spectrum of autism; having lived in the world for 7 years I know lots of nonverbal kids, teens, and young adults. Why did my kid become verbal and they did not? I don't know. But I do know that my son is autistic and I hope he will always be proud to be. He's unique in every way.

Kate

If I understand correctly, part of the reason for the DSMV rejigging of the ASD category is that the terminology was being used in confusing and inconsistent ways... You say definitely that your DS does not have Asperger's, but is high-functioning autistic, and you imply that you don't want to hear from parents of children with Asperger's but only from those with HFA. Yet, many people including many practitioners use those terms interchangeably. I don't mean to nitpick, but I think it would help if you would clarify. What is it about your DS that you want to be shared by the children you want to hear about, and why?

It is hotly debated whether anyone will "lose" a diagnosis as a result of the DSM revision.

For example:
http://www.medscape.com/viewarticle/757515
"Concern Over Changes to Autism Criteria Unfounded, Says APA"
"Concerns that proposed changes to autism criteria in the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) will exclude many individuals from diagnosis and treatment are unfounded, says the American Psychiatric Association (APA)."

but also this:

http://www.thinkingautismguide.com/2012/11/autism-and-new-dsm-5-criteria-who-will.html


At some point a retest is in order. Our neuropsych tests every few years.

Manifestations are vastly different over a person's development. Our DS is gradually morphing into a socially awkward but generally more acceptable citizen as he moves toward teenagerhood. There is no doubt, however, that he will remain autistic; it's just that his challenges will look different in adulthood than when he was a preschooler, because he is learning and growing.

Most adult autistics report that there is a cost to "passing" for typical; they find that they can "look typical" in some settings but that it still requires disproportionate effort. Autism is a lifelong neurological setup.

DeeDee

wow! these have been very thoughtful responses!!
real quick to colinsmum-
no my son does not have aspergers
he is straight regressive (classic) autism.
&i don't mind hearing from aspies but it is true- there is so much about them already for me to read, they have an awesome community, and it is helpful, but this is why i asked for parents of kids with just plain ole fashioned autism to put in their 2cents

but it is definitely all good to hear

*i agree with all of you as well, in that my son will always be autistic...right now he is doing well, but with his negative experience in kinder, he began to exhibit some stimming behaviors at home, his safe zone perhaps. ((deedee- this is like what you mentioned above, my DS kept it together during school, let go @home))

i also know many kids/teens with various dx on autism spectrum- and i agree too, how/what/why is my son at a higher level and some kids who were right there with him at same level, both dx at age 3, my kid is HFA, this other child is LFA/nonverbal. his mom has asked me over and over and over--- what did you do that i didn't do? there is no answer.
i didn't go ABA route. i went more the play therapy route.
oh-i've also seen many young preteens who many would think were typical kids, maybe with some slight quirkiness (how one might describe my DS) suddenly hit puberty or some other type of say life changing event(divorce? a death, etc) and the kids suddenly seemed to regress into more autistic like behavior. of course these things affect everyone differently but most ppl do not become autistic because their pet died.

i think that is probably hardest fact about HFA- they are aware enough to know they are different. they are smart enough to realize that society has certain rules, and they must work very very hard to fit in, etc and at same time while they do this- society is holding them to "societal standards" (did i just make that up?) when really they are struggling internally...
if they were a lower level autistic, then society would automatically give them more of a pardon, make accomodations for them... not so for the HFA who blends in.


anyhow, back to the gifted aut... do you all find your child fits in better socially as well in the correct academic level/setting? are they able to relate to their NT peers better b/c they are all same academic level is what i am asking.

oh and re autism and cure- my thoughts-
it isn't an illness right? so there couldn't be a "cure"...?

it is a lifelong neurological disorder which means like others of same type, there is treatment that can help an individual- in this case, to communicate, or to function more in society, etc etc and so on.
i agree too that a child learns these skills-
my child receives "adaptive skills training" and he hopefully learns new ways to do communicate/ or understand things that a NT might just somehow automatically know how to do or take for granted...

but he won't be cured. i don't find ppl who use this term to be hurtful though...i think ppl deal with things differently and for some that means pretending something isn't so/doesn't exist etc....

also, i do admit that i have used the word 'recover'... to me recover is like well a lifelong thing, always working on recovery, focusing on staying recovered. doesn't mean don't have it, but have recovered enough from it to more fully function.
but maybe many find recovered offensive as well?

i'm thinking- like a recovered alcholic is still an alcoholic. not that i am comparing aut& alchy's! yikes!

Right. The neurodiversity movement would recognize "recovery" as equally offensive. In that view, you "recover" from a cold or another disease. Autism is a way of being, different but valid-- nothing one would need to recover from.

That's a complicated one for me; we have needed to change a lot of DS10's behavior to get him to participate meaningfully in society, and it's been a lot of work for him. I think this will help him get to a better life; some in the neurodiversity movement would say I'm torturing him and taking away essential features of his nature. Ultimately, I want him to have the choice of full participation, without feeling like his autism is something to be ashamed of.

DeeDee

I also want to note that "high-functioning" doesn't mean much-- it is not even an official diagnostic term. It is usually used by doctors who want to soften the blow of receiving an autism diagnosis, to avoid having the parents cry in the office.

"But he's so high-functioning" is often also a way for families to separate their kid from others on the spectrum, as if it put the child into a different social class or mark him as having greater potential than the sad cases. Because of this, I refuse to refer to autistics by "functioning" level.

(And it's not as if neurologically typical people function at the same level all the time, either-- find me on a day when I've lost my car keys or spilled my coffee, and ask me if I am "high" or "low" functioning.)

The practical difference between "HFA" (again, not a diagnostic term) and Asperger's often comes down to the diagnosing doctor's individual preference, unless there's something obvious in the history (as with your DS, who regressed) that would correspond clearly to one or the other label.

There is no reason for you to avoid making common cause with people across the autism spectrum-- Asperger's included-- not least because the struggles with social skills, pragmatic language, executive function, and so forth usually overlap. There is a reason why these diagnoses are being brought together in the new DSM. And yes, you will find more of the gifted autistics do carry the "Asperger" label, again more because of providers' and families' ideas of how best to describe the kid so people will understand the label than due to any real difference in symptoms or outcome.

DeeDee

It's ok.. we know what you mean I was going to use the same analogy but then got sidetracked before I had a chance to write my reply.

thanks ccn!

and deedee, i knew what i was posting is controversial, if that's the right word, even among autistic individuals themselves.

and re aspergers, and autism (high functioning), i beg to differ, but i think there is a big difference between the 2. maybe i understand it incorrectly though?

the main thing is aspergers don't generally present with a verbal delay. they usually have very good verbal skills- not to say that they have good social language skills.
and autistics are verbally delayed, and/or they are typically developing in language and then lose their communication. but even when auts get their language skills back, they don't go on and on and on and on like an aspie will...
at least this has been the case with just about all i have ever met.

also aspergers tends to have that huge 1area focus (or several) whereas auts don't as much though they might still be repetitive, which isn't quite same thing as always wanting to talk about say dinosaurs. and only dinosaurs.

but sorry, i wasn't wanting to get into debate of what aspergers is and what autism is. and i am appreciative to all feedback, but again, i think there is a difference.

and i don't mind saying low or high functioning or level aut-- because the spectrum is so wide, and high to one person means something different than high to another but on some level it means that the child does have some normal functioning, i have never met a parent of an autistic child who did not infact describe their child by either high or low or mild or severe... and then the ones who say aspergers...

still i like the facts of why you choose not to, and that gives me something to think about and perhaps reconsider my own views so thank you for that deedee

I was language delayed, assessed as having Autism as opposed to aspergers, and I go on and on and on and on and on.....

But I do wonder if severity of functional impairment is the right way to break down the ASD diagnosis. There does seem to be some kind of type difference in there. Certainly my vague understanding of the genetics supports that.

None of my friends (incl DH) who are assessed as aspie stim significantly, or have noticeable troubles with self-care or self-injury, which, somewhat embarrassingly, I do. The one person I know who does turns out to also have had early language delay and described a very similar thought process about how to present himself to what I describe below. Also, even amongst a crowd of mostly aspies, I have a well known and fairly intense reputation for not caring what other people think... which is wierd, 'cause I feel like I care painfully deeply what others think. Now, if I look at my life as objectively as possible, I have to say that my major life choices make it look like they're correct, and I'm out to lunch on that point. So... er... um.... yeah.

When people ask me about it I usually pretend I think the diagnosis was a misdiagnosis, or at the very least avoid any mention of the term "autism." I pass pretty well, apart from having some trouble holding down jobs, and most people just can't wrap their minds around applying "aspie," let alone "autistic" to someone like me.

When I'm being genuinely honest, I would self identify as HFA and not as aspie. But it's a minefield, and I've learned to not be honest most of the time. I think it's going to be a long time before this terminology can be made to matter in any valuable way. I think the DSM change (as I understand it) is all to the good. I was surprised it did't come up on here sooner.

uh. so now that I feel like I'm standing around naked... bye!

I think it's interesting the way the various Dr's interpret the criteria, personally. I would never have described my son as having any language delay. He starting speaking right on time (I want to say 8 months with 'car'?) and always knew more words than whatever the pediatrician asked at his appointment. However, I guess the neuropsychologist counts his massive pragmatic language delay and that's why my son received a PDD-NOS diagnosis as opposed to Asperger's? I honestly don't know, because I didn't think to ask her while we were there... I think that getting a diagnosis will in the future, as it does now, depend on which doctor you see on which day. Some will interpret the DSM guidelines very broadly, others extremely narrow. For me, I would love it, if, eventually, my son no longer met the criteria for ASD. I know that wouldn't mean he's cured, but it would mean he's progressed enough that his ASD isn't impacting his life in a negative manner.

Michaela - thanks so much for your insight and honesty, that really gave me a lot to think about as I try to figure out whether there is a difference between aspergers and HFA and which I think my DD has. It doesn't seem to be distinguished here in Australia. And when I have read about ways of teasing out the two it's been more about issues like aspergers may be more verbal but more non-vervally challenged, HFA may be more verbally challenged but more non-verbally able/gifted... And my DD is certainly more in the verbally weak/non-verbal strength camp, and like Epoh's DS she spoke early and "well" so I had no idea she needed speech therapy until now, years later as I have come to understand the difference between speech and language development and that she did indeed have a significant language development issue (it took me many months to teach her the correct use of pronouns, she would regularly bitterly argue for the exact opposite of what she wanted and then have a meltdown when she got what she argued for, numerous other issues)...

Locally at least, the tendency seems to be to use "autism" as an umbrella term, and Asperger's/HFA almost interchangeably. My daughter was speech delayed, somewhat, but still met criteria for Asperger's if you considered that she was youngest, a twin, and had no particular need to speak for herself since others were so happy to meet her needs without it. The "manipulative vs speech delay" quandary, I guess. (I use both terms, and oddly, her IEP uses neither, but spells out different aspects of the whole thing under "other health impaired".)
Add that to the wide range of clinicians' opinions as to criteria for "high functioning", and I can understand why there seems to be a need for reclassification. It would be helpful if at least some of the world were on the same page.