My LONG report from the DR! | Autism PDD
Mamakat,
Thanks a lot taking the time to post all that. We all get to feel as though we have had the opportunity to have some questions answered from an authority on the subject.
Norwaymom thanks for the links.
Concernedpa.
I've just reread this and realize that THIS is what I've been trying to articulate when I've said in posts that I think it's kind of clear by the time the child reaches kindergarten where the child IS on the spectrum. In the past, some posters have taken that to mean that I've observed no improvement in kids after kindergarten. That's not so. It's just that is becomes clear by then how involved the particular child is in Autism and that degree of involvement doesn't seem to change markedly as the child grows. Of course, that does not mean that the child won't improve and won't even become fully independent. But when I meet kids who were with my son in preschool now that they are all teens, I have had no surprises. The highest functioning of them is still the highest functioning. The ones with the best language still have the best language, etc. I found that there WERE developmental surprises when the kid were younger than kindergarten, but fewer as the children aged. I think this is what Dr. Ritvo is saying. I LOVE this post. It's summarizes the issues of this disability SO well. Thanks again for posting it.
This was a great post! Thank you!
But......it also made me feel that now--my son isn't even on the spectrum. I don't think he has this "stair-step" type of development. Or maybe I just don't notice it.
On the link that had the degrees of ASD-----I found more on there for Dh then Jacob!!!
Yes Yes Yes! How freeing when you have done everything and still feel guilt because it was 'not enough'! [/QUOTE] Yeah and then there is the guilt, too for not having a dx until late, so having done NOTHING ... very freeing, indeed. That said, my goodness what a MOTEHRLODE of wisdom -- the inside SCOOP! Thank you so much for sharing all of this, MamaKat! I now have a new author to devour ... CHOMP! Thanks so much for the post. I especially liked the part that we need to meet them at their developmental age and not their stated age. That is so eye opening for me. As well as I printed this for my DH. It also makes me want to take Adam in for an appt for a reeval. Not a re-dx, but where is he develomentally, and how can we help him. THis was great. THANKS so much Mamakat, I think this was SUPER reading and am in agreement with so much of it! I epsecially liked: ALL of our children will improve, regardless of the severity of Yes Yes Yes! How freeing when you have doen everything and still feel guilt because it was 'not enough'! Thanks again - I am saving this for certain - Thanks for writing that up! I had come to many of the same conclusions, so it's good to know that the conclusions that I've come to agree with this authority's take! One thing that I wonder about - given the uneven developmental pattern, do many of the HFA kids actually attain adult level functioning in the various developmental domains - do they 'catch up'? I mean, in a cross country race, you have the rabbits out front, the stragglers in the back, and lots of people in between, some running a steady pace, some running hard, then walking for a bit, running hard again, etc. They all generally reach the same finish line, though. Also, did he mention anything about girls in particular? Thanks for writing all that out - whew! That must have taken a long time! I know because I often write novel-length posts.
I am PMing you about the potty BTW. THREE CHEERS FOR MAMA KAT... HIP HIP HOORAY! HIP HIP HOORAY! HIP HIP HOORAY!
Is this down to earth doc hiring? Maybe he could be my mentor if I go back to work and focus on "Autism Family Medicine"
Where is he located? I'm sorry, but I forget what state you're in. How long did you wait for your appointment? Thanks again for a truly helpful and comforting post! Thanks for taking the time to write this for us!! I know how busy you have been from your other posts! UGH and good luck with all the papers you have been writing. Great info and I'm moving on to check out the links from NorwayMom! Thanks again!!!
Thanks NorwayMom too! Thanks for the interesting articles Norway mom. I especially enjoyed the one about the parents. Mama Kat, If you get the chance, please let him know how helpful his thoughts are to me and many others here. Thanks for taking the time to post that MamaKat. What a fabulous doctor. Thanks so much for writing this and making it understandable for my feeble mind:) He had very sound advise..I am scared about the anxieties part because Sarah doesnt do that yet .. Ever since they stated to me she was probable aspergers years ago I have been waiting for the rigid and anxieties to kick in..(I need to stop doing this:) The rigidness has arrived but not major fears or anxieties which are bound to happen because of my own personal history of them. The developmental aspects made sense to me..Sarah has always been scattered and it seems that the more the lower skills start to catch up the more the higher skills slow down...I read that somewhere it is normal for our kids to do this? I was always more afraid of a plateau and not progressing anymore..so far that hasnt happened..knock on wood! Thanks again for doing this for us:) If you need us to write anything for you..just let us know:)thanks so much for taking the time to write all this for us :)
This was really interesting, and thanks for taking the time to write it all down and share it with us. I like his attitude, and I did a little googling to find other stuff he may have written (his book sounds interesting, and he also has a children's book, but I wanted something to read today). Here's what I found. The first two are his writing, the last 3 just have quotes by him. http://www.faaas.org/doc.php?25,43: A short LA Times article called "Casting Light on Shadow Syndromes: Autism: Discovery of a milder form of this illness illustrates how many who need help are cruelly dismissed as malingerers." dated September 5, 1997. http://www.faaas.org/doc.php?32,172,114343p,faa491125,,,Doc, page.html: A longer professional article, but well worth reading. It presents 14 case studies of autistic parents (who were discovered because of their children's autism) -- people born as early as 1917! Life was not easy for them... Also includes a chart of what constitutes severe, moderate, mild and subclinical autism. http://www.bridges4kids.org/Disabilities/articles/BBC9-02.ht ml - a debate where Ritvo has a couple comments. 1) that too much therapy is deprimental to personality and social development (kids need to be kids), and 2) that the rise in autism cases is due to re-categorization (used to be categorized as MR or whatever). http://www.autisticsociety.org/News/print/sid=509.html: "In the late 1980s, Edward Ritvo, a California researcher, began to look more closely at the parents of some severely autistic children. They looked a bit autistic themselves. Many of them walked with an odd tiptoe gait, flapped their hands and rocked in their chairs. A few were social loners. Other experts confirmed Dr. Ritvo's cautious suspicions -- at least 11 of the parents in his study were autistic. He later remarked, "If you had told me 10 years ago that there were autistics who were married and had kids, I would have said, 'You're crazy.' " http://www.bighealthtree.com/news/mental-health,23/some-pare nts-find-success-in-experimental-treatments-for-autism,80075 .html: Comment on Hyperbaric oxygen therapy: ""There is no scientific valid evidence that any of these treatments alter the natural course of the disease," said Edward Ritvo, UCLA professor emeritus and author of "Understanding the Nature of Autism and Asperger's Disorder: Forty Years Along the Research Trail." "I'm very glad [Joseph] got better, but he got better because it was the genetic program and God's will, not because of what was done to him," he said. http://www.thefreelibrary.com/HIS+PLACE+IN+THE+WORLD+:+AUTIS TIC+BOY+SHOWS+TALENT+FOR+GEOGRAPHY-a083860413 - Ritvo comments about a kid with Aspergers who has a knack for geography. "Dr. Edward Ritvo, the head of UCLA Medical School's Autism Clinic, said such behavior is characteristic in Asperger syndrome. The region of Chris' brain that handles memory likely developed normally, while other areas controlling socialization did not, Ritvo said. As a result, Chris has highly developed his memory capacity in much the same way that a blind person may develop acute hearing or a keen sense of smell." [QUOTE=MamaKat]Dr. Ritvo kept reminding me that my son was first and foremost a CHILD. I loved this bit. Mamkat - thanks for posting, I really enjoyed reading the post and will be printing it off for hubby to look at when he gets home. MamaKat, THANK YOU so much for all your time and effort! A lot of what the doctor said about everything sure makes me feel less guilty about not finding more intensive therapies when Tony was younger. NorwayMom.... I haven't had a chance to check your links... but I'm sure they are just as helpful! Thanks again, both of you! Mary Thank you for the postings. I find that I just spend all day and night coping with behaviors and never have the time to do research which is really important. Thanks to everyone for all the information, help and knowledge that everything we are experiencing so have you all, it's a relief in an odd way. "The Chinese menus disorder" is how I've LONG described ASD. Boy, do I feel Dr. Ritvo is on my same wavelength. Again, thanks for posting about this very wise a perceptive doctor. May we all find one like him. Thank you so much for taking the time to post this. This is right in line with what I've thought and felt all along but it means so much to hear it validated by a professional.
their autism. Some will be able to live and work independently, some will
not. It all depends on the severity of their developmental abnormalities—
not on how much therapy or treatments we give them.
Thank You, Thank You, Thank You a thousand times for your wonderful post, And all of your other ones too!
I just ordered the book on Amazon. I really have felt a lot of that inside about Tyler, but this will help us to get him to be the most comfortable with the way that the world spins for him. As I have felt qall along this ride, that is the best thing as parents that we can do.
I love you girl, John
I found everything made heaps of sense, and a lot of it sounds like exactly
what I have been thinking.
"As with most diseases there appears to be a mild form of autism that is compatible in adulthood with marriage, parenting, satisfactory heterosexual performance and gainful employment," he wrote in a landmark 1988 article.
Dr. Dr. Ritvo did say that different children obviously require different
amounts of therapy. I also posed a couple of very specific questions to
him about how to manage extreme anxieities and about certain language
issues, and he said without reservation, that these are definitely
questions for the behavioral therapist or the speech therapist, as they are
the experts in their field.
The muscle tone thing is classified under sensory-motor delays. His take
is that there are global developmental delays associalted with autism.
Even the kids with major sleep issues are mostly exhibiting "infantile
sleep patterns" (yes, this is based on real research
Thanks, Jan!
I read it first na na na! I feel so much better after reading this. I think I certainly tend to overanalyze instead of seeing normal behavior for his "real age" not his biological age. Being reminded that progress will be made with or without tons of therapy confirms my gut feelings. And to remember that the anxieties and possibly even the really out of control stuff going on here lately is really exaggerated "normal" behavior. I think I need to stop seeing so much "autistic" behavior and look at the "core" behavior more. kwim? Love the part about the social blindness, reminds me so much of my #$^% ex, as well. Thanks. I am going armed on Mon. with my questions. She is one of the autism experts in the midwest. She is a little more pro tons of hrs of therapy than I like, but is so knowledgeable and really makes you feel comfortable asking lots of questions. They just started a huge 10 year study. We just missed the age cutoff. Thanks for taking the time. Did he have any more specific suggestions about behavioral therapy for the anxieties? He is so terrified of any vehicle, anywhere. Makes life rather diffficult. Did he mention drugs for severe anxieties when they get older, if they are really crippling. I suppose he would say treat it as you would with any child and disregard the fact that they are autistic? Did he have any thoughts on the whole muscle tone problems that seem to exsist along with autism in many cases? O.K. I will stop now. Another book on my list. Friends, here it is my LONG report from the Dr. I only ask that you read
it, since I spent all night writing it! (I’m writing this as a word doc first, so
any weird formatting can be chalked up to the ‘ol copy and paste
business)
My visit with Dr. Edward Ritvo—
Here are all my warnings, disclaimers, any necessary apologies for any
thing that could possibly bug anyone. For real. This is just my report of
a meeting that was really helpful and enlightening to me.
Caveat #1: This info is all filtered through me, not directly from the Dr. I
really liked him-- he is a very kind and decent man, so I don’t intend to
misrepresent him here.
Caveat#2: Dr. Ritvo does not believe in any of the current biomedical
treatments available today. Based on his years in the field of autism, and
the fact that he seems to be a researcher and a medical scientist at heart
(as well as a clinician), I can see why. So, if you are a fan of DAN!
Protocol, or other biomedical interventions, please don’t take this as
attack on your beliefs. I will say he thinks most alternative treatments
(like auditory integration therapy, GFCF diets, etc. –more in his book) are
harmless but as of yet unproven, but insisted that I stay away from:
Chelation, nystatin, cranial sacral manipulation (there are more in his
book) because of dangerous possible side effects. (yes, he is keeping
count of chelation related deaths)
Dr. Ritvo is incredibly warm and down to earth and we spoke for nearly 2
hours on Wed. He thumbed through all of Jasper’s records and evals to
get a general idea of “where he was at” both developmentally and where
on the spectrum he falls.
Here are some highlights:
On spurts and plateaus in development: Like I posted elsewhere, it has
been shown that children with ASD develop in a peculiar staircase like
pattern that is not present in any other disorder. He thinks this kind of
development where Social, Language, and motor skills develop in sudden
bursts, not in sync with one another is the biggest predictor of a child
fitting somewhere on the spectrum.
On Anxiety: He was very quick to remind me that ALL children between
ages 2 and 7 (take note here of your child’s developmental age, not just
their actual age) experience major fears, nightmares and irrational
anxiety. This is the age of “monsters in the closet” etc. Our kids are
simply more exquisitely sensitive and narrowly focused, so fears are
much worse. He maintains that nothing has to be done about the small
phobias—he sees them pass a children develop all the time. He
recommends behavioral therapy for unmanageable phobias (like Jasper’s
fear of the floor, Sharlet’s fear of bathing, extreme toileting phobias) He
maintains that this is not part of autism, just anxiety exacerbated by
autism.
Speaking of toileting: He suggested, that even though Jasper is 4.5, that
his developmental stage when it comes to potty training is obviously
younger. Jasper has a fear of toilets (which Dr. Ritvo again reminded me
was a common fear in younger typical children) He has seen great success
in using a potty chair instead of a toilet with a seat, even though Jasper
might seem too big for it. He reminded me to accommodate my child at
his developmental age in different areas. He suggested we work with him
as though he were 2.5 on this, even though his speech and cognitive
skills are good. To use this model for all of his learning. Meet him where
he’s at. Pushing our kids to master something they are not
developmentally able to do for, usually ends in disaster.
Why my child can interact with adults and not other kids: Children use far
more gestures and unspoken cues in play than adults do. Our kids are
literally blind (to differing degrees to this type of symbolic language)
They can’t read the shrugs, facial cues, body language, and other
unspoken rules in kids play. Adults have more complex verbal skills, and
are much easier for our kids to follow because of this.
I asked if my ADHD was linked to autism: He told me that extensive
research has been done and no connections have been made between the
two disorders. Though, he believes that it is of the utmost importance to
manage the ADHD in autistic kids before their therapies can be as helpful
as they could.
On Therapeutic Interventions: He said as of right now there is no therapy
that will CURE autism, but there are many effective “supportive therapies”
to help our kids as they develop. Following the staircase model of
development, he says that raising an educating a child with autism is like
following a bumblebee in flight. You HAVE to support them where they
are developmentally in all different areas. One year, they may need
intensive therapy A. The next year (or six months later) they may need
more therapy B. A certain kind of school setting might be wonderful for a
while, but then be inappropriate as our children continue to develop. A
non verbal child might acquire an astounding amount of language rather
suddenly. That means they are ready for new therapies. He said I have to
keep mixing it up.
On Development: Our kids WILL develop without interventions, just like
NT kids do. They just develop abnormally and sporadically. OT, Speech,
PT, ABA etc. are all excellent “supportive therapies” to help our kids
develop to their highest potential. He recommends getting yearly
evaluations until the teen years at least to keep up with their abilities and
deficits. So we can make the best decisions about how to support them
as they grow.
Dr. Ritvo kept reminding me that my son was first and foremost a CHILD.
Who will pass through most of the developmental milestones that other
kids do. Just at his own sporadic pace. We cannot move our kids ahead
in their development—we can just make sure that the abilities they do
develop are properly supported and skills worked on as they emerge.
Although this sounds like common sense, I think it’s really easy as a
parent to keep looking for that therapy that will REALLY change our
kiddos, you know?
Prognosis: ALL of our children will improve, regardless of the severity of
their autism. Some will be able to live and work independently, some will
not. It all depends on the severity of their developmental abnormalities—
not on how much therapy or treatments we give them. Therapies do,
however, ensure that kids will function at their highest capabilities.
On Asperger’s: For a Dr. who has a sub-specialty in diagnosing adults
with asperger’s, he was mighty quick to dismiss the terminology. He
repeatedly reminded me that it is just “mild autism”. I started talking
about Jasper’s lack of a speech delay, and he referred me back to the
staircase model of idiosyncratic development, and said it’s all just autism.
He is one of the people responsible for our understanding today of
autism as a spectrum disorder, so that makes sense.
On the “epidemic”: He really believes it’s an epidemic of identifying cases,
and a better broader understanding of the disorder that accounts for
most cases. He has not ruled out an environmental cause, but says if
there is one, it hasn’t been discovered yet.
On Vaccines: He and his colleagues (an international and far reaching
group) don’t think thimerisol or mercury is responsible. None of the
research has been convincing or shown any consistent results. He is
open to the research being done to determine whether the AMOUNT of
vaccines given at such early age can start an abnormal immune reaction.
He says it’s a hypothesis that’s being researched extensively, but there
are no answers yay or nay, as of now. If you are worried about vaccines,
he suggests finding a ped. Who is open to spacing the shots out and
giving them one at a time. As a medical professional, he is seeing all the
worldwide results of not inoculating kids and the resurgance of many
previously eradicated diseases, so he can’t really get behind not
vaccinating kids.
He also says that for as long as he has been working with autisitic
children, there have ALWAYS been two types of onset: Early onset, in
which the parents report that even from the beginning their child was
“different” and Late onset, in which a loss of skills, or a halt in “normal”
development occurs between 18months and 2 years. He hasn’t seen the
prevalence of those two presentations change with the increase in
vaccinations.
On Early Intervention: I was reminded of the historical treatment,
institutionalization, and de-humanizing treatment of people with autism.
Yes, Early Intervention is important, but said that I was Jasper’s early
intervention. Just because he was not dx’d until after 3, does not mean
his brain was languishing before I set up a program for him. He told me
something worth passing on: We are smart parents who are consulting
with the right people, doing research, and parent in a very different way
than people did in the past. We TALK with our kids. We PLAY with our
kids. We expose them to the world. That is more early intervention than
many kids from many previous generations received, and that none of us
should worry if our children weren’t diagnosed until a later age—they can
continue to develop and make great strides regardless of when we seek
therapies. Earlier just mean you have less catch-up to do, not that you
missed some magic window for intervention.
On some of my unanswered questions about some of my former DH’s
behaviors (aspie dx’d by ME):
I told him how my DH would regularly leave for business trips without
leaving me any itinerary of any sort. He finished the story for me. “And
no matter how many times you told him it was a huge problem, nothing
ever changed.” He went on to describe “social blindness in a very
concrete way that made sense to me. He put his hands about an inch
apart in front of his eyes to demonstrate a very narrow field of focus. He
kind of looked around in a circle like a radar instrument looking through
this narrow field. And said, if you’re not in this area of focus at the time,
your DH really can’t see you. No matter how many times you have talked
out a problem, and you thought it was solved with your husband—he
continues to do the same behaviors. He is focused narrowly on his plan
for the day, and truly cannot see the part where he is supposed to call
you. “Speak to him only with concrete directions and information” Any
extra information (such as emotions, and descriptions of problems
caused by his behavior) will just confuse the main issue for him, which is:
What he needs to do” And yes, even if he understands what to do, you
still need to find a way to get it into his area of focus at the time. Visual
reminders are best. Obviously this is personal to my situation. But, the
understanding of narrow focus, whether it be on a particular area of
interest, or just someone’s tasks at work made a whole lot of sense to
me. I could relate it to many repetitive behaviors in children, no matter
the degree of severity.
On other dx’s and allergies: Children with autism are no more prone to
having any other condition than the general population of children at
large. Saying, If your child has severe allergies, he will definitely find
much relief when you treat those allergies, and may even have better
behavior or attention, but he will still have autism. Just like his
understanding of ADHD. Bi-polar, too.. delayed mylenation as well (yes,
Shelley, I asked!)
What I liked most about talking to him were his constant reminders not to
pathologize all of my child’s behaviors. That other than his autism, he is
a child prone to all the same things other children are. But the autism
makes them more exquisitely sensitive. More frustrated. Just MORE.
He impressed me with ability to keep looking forward. He isn’t rigid in
his understanding of autism at all. He has learned what we know so far
to be true, and works from there. He is pretty passionate about following
all current research and looks forward to all the new knowledge to come.
Like I said before, he’s not against the idea of an environmental cause,
he’s just humble enough on behalf of the medical world to admit we
haven’t gotten there yet.
His book is super interesting to me. It’s called “Understanding the nature
of autism and Asperger’s “ It’s one of those little paperback books like
Tony Attwood’s books. About .00 on amazon. It provides a “medical
model” to look at the abnormal development of autistic kids, and
provides a look at 40+ years of research, and shows the history of how
we got from the “refrigerator mother” theories to what knowledge we
have today. Tony Attwood wrote a short forward to the book, in which he
acknowledges the value in seeing all the historical research as opposed to
just modern studies taken out of context.
His “best guess”, after 45 years in the field of autism, is that its genetic
markers will be identified one day (after we invent the technology). That’s
where the “cure” will be found, he thinks.
Basically he made me feel less pressured to do MORE therapies with J just
GOOD supportive ones, and just kept steering the conversation back to
the fact that first and foremost Jasper is a child, reminding me about
common sense parenting, and recognizing different developmental needs
as they come up. He also KNOWS what parents go through with their
kids. There really wasn’t a single example I brought up that he hadn’t
seen before.
I got a big hug at the end, and a promise that I could call him anytime for
a free phone consult with him about any puzzling behaviors with Jasper,
or to ask about any new treatments or theories I’m curious about. He was
one of the most genuine and unpretentious people I have ever met.
I’m sure I’ll recall more later. Feel free to jog my memory with a
question.
If you’ve read this far, BLESS YOUR HEART and a big smoocheroo!
Who will pass through most of the developmental milestones that other
kids do. Just at his own sporadic pace. We cannot move our kids ahead
in their development—we can just make sure that the abilities they do
develop are properly supported and skills worked on as they emerge.
[/QUOTE]
couldn't wait to pass it on!
Dr. Ritvo also said something interesting in his book: Even though he
was on the team of Dr.s who co wrote the DSM criteria for pervasive
developmental disorders, he laments how it ended up being formatted in
what he called a "chinese take-out style menu" 2 items from column A, 3
items from column B--and the fortune cookie is Free! Yes folks, those
are his words. Apparently he and a few of his colleagues were pushing
for a more developmental model.
For those of you who missed my original post: I neither sought Dr. Ritvo
out nor waited for an appointment. It was a totally random stroke of luck
that led me to him. I had been searching everywhere for a therapist (for
me) who has some knowledge of autism and asperger's since it is such a
big part of my life, and I'm still having huge problems communicating
with Jasper's Dad. I jumped into yet another exhaustive internet search,
and didn't really find any therapists in LA, but Dr. Ritvo's name kept
popping up as someone connected to Asperger's adults. I figured I'd call
him and perhaps get some references or resources. I didn't really know
what he did. I called fully intending to leave a message as it was Sunday
and the prefix was a UCLA campus phone. Randomly, he answered the
phone. I told him what I was looking for, and he said charmingly, "Well,
ou're in the right church, I'm just not sure you're sittng in the right pew."
We ended up having a very pleasant conversation for about 20 minutes.
He told me a bit about himself, and told me he was retired from the UCLA
Asperger's clinic but still maintained an office at home. He asked if I
would like to Drive up to to his house in Bel-Air to talk some more later in
the week. He said, bring your son's files, and write down any questions
you have for me before you come, and we'll go from there So after a bit o'
googling--I discovered that I had been talking to one of the biggest
researchers and clinicians in the field of autism! crazy and really
wonderful. He makes so much sense to me and has so much experience
to back it up.
Somehow, I really feel that I stumbled onto the fundamental knowledge I
had been searching for.
I had ALL of you in my mind as I was talking to him on Wed. So, I'm
happy it was helpful to you as well.
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