Prognosis resources | Autism PDD
Shelley...us too...everyone is so vague in what our son's future holds...with the exception of one doctor that felt she needed to tell us Mason would never be able to count change, much less live on his own. But I did ask!
Thanks NorwayMom...your info is so helpful...I'm starting to get dependent on you, though, lol...rather than looking up the info myself...but please, please, don't stop!!
Thanks Norway:)
Personally all the professionals I have talked to...they are so vague when I ask them what the future holds..it makes me wonder if they truely follow the childs progress at all once they get diagnosed?
The best I have heard from them is "she will learn skills"
I love to hear success stories of the adults with ASD on board that beat the odds against all predictaments and are surviving...that keeps me going:)
Saved your link for later reading:) Too many words:P
Norway Mom -- You are the BEST when it comes to posting great articles! I LOVE the first, in particular. How many HOURS a day do you spend tracking these things down??? You are such a wonderful resource on this Board. Thanks.I usually have my mornings free, so I do spend quite a bit of time on things related to this forum. However, these particular things fell into my lap. I just decided recently to gather them in one place so they'd be easy to find. I'm glad other people find it helpful. [QUOTE=Faithishope] On the second one (McDonald), did it give any ranges for the scores? I wonder what is "higher"? [/QUOTE]Faithishope, the way I was figuring it after I did this checklist for Skylar( don't know if the way I figured was right...) but there are a total of 18 questions, the highest score for each question being 3, so I would figure for this one to have a total score of 54 at the highest and 18 at the lowest. But that is just My opinion
But then again, I could be WAY off on this.
I'm afraid I don't have the scoring guide for the McDonald checklist -- there might not even be one.
Right now there seems to be very little scientific evidence on what characteristics predict future success. However, since parents naturally wonder what the future holds for their child, I've gathered a few online resources on prognosis. Note: web addresses somehow get blank spaces added into them, so if the link doesn't work, try deleting the blank spaces. If it still doesn't work, let me know and I can fix it.
1) http://pediatrics.aappublications.org/cgi/content/full/105/5 /e65 - In this article, Dr. James Coplan presents a conceptual model, based on 2 decades of clinical experience, that he has found useful when introducing parents to the diagnosis of ASD and making preliminary statements about prognosis.
2) Article by James D. McDonald, originally posted on this forum by Daddy. See separate post under this topic.
3) http://www.journals.royalsoc.ac.uk/content/dh6qbh4k3cw76bnr/ - Abstract of a study involving joint attention and imitative ability. I've posted this abstract in an easier to read format under a separate post under this topic.
Any other resources to add?
Here's the article by James D. McDonald, originally posted to this forum by Daddy.
<quote>
Q: What are early signs that my child will become more social and communicative and act less in autistic ways? (Even if diagnosed autistic)
Over 30 years of clinical research shows that young children, who show the following behaviors, tend to become more social and communicative and show less and less autistic features. Consequently, I strongly recommend you to ask whether your child shows some of these and that they become your first goals before you focus on language, academics (school) or compliance training. Note that many of these are the positive sides to the defining features of autism. (See DSM IV) Your big job is to help your child do more of what he can do and not focus on what he cannot now do easily.
Score each as follows: 1=Never or rarely, 2= Occasionally, 3=
Frequently. The higher the score, the more optimistic you can be since your child has many behaviors that predict success.
Your child's interactive Life.
1. ___ Imitates and models what others do.
2. ___ Takes turns and plays in a give and take style.
3. ___ Tries to get and keep your attention.
Your child's Nonverbal-communicative life
1. ___ Uses body movements to deliberately communicate.
2. ___Directs sounds to deliberately communicate.
3. ___ Responds to others' communication.
4. ___Shares experiences with others.
Your child's social use of language.
1. ___ Directs words more to others than to himself.
2. ___ Talk about things other than his own interests.
3. ___ Talks more for friendship than for needs.
4. ___ Responds meaningfully to what others say.
5. ___ Cares about whether he is understood.
6. ___ Talks spontaneously and relevant.
Your child's Civil behavior.
1. ___ Cooperates and follows directions
2. ___ Manages his impulsive behavior at times.
3. ___ Shows, affection, concern and empathy.
4. __ _Takes others perspective- 'reads their minds'
5. ___ Adapts his behavior to the situation.
<unquote>
Source: an article by James D. MacDonald. Read more by this author at www.jamesdmacdonald.org
Here's the abstract on joint attention and imitating as signs of a good prognosis. I added paragraph marks and notes to make it easier to read.
<Quote>
Joint attention abilities play a crucial role in the development of autism. Impairments in joint attention are among the earliest signs of the disorder and joint attention skills relate to outcome, both in the 'natural course' of autism and through being targeted in early intervention programmes.
In the current study, concurrent and longitudinal associations between joint attention and other social communication abilities measured in a sample of infants with autism and related pervasive developmental disorders at age 20 months, and language and symptom severity at age 42 months, were examined.
Extending the findings from previous studies, joint attention ability was positively associated with language gains and (lower) social and communication symptoms, and imitation ability was also positively associated with later language [Norway Mom's interpretation: those who could imitate were more likely to acquire language, those who couldn't were more likely to be nonverbal]
Some specificity in the association between different aspects of joint attention behaviours and outcome was found: declarative, triadic gaze switching predicted language and symptom severity but imperative, dyadic eye contact behaviours did not. [Norway Mom notes: I'm assuming that diadic is between adult and child, triadic is between adult, child and object; declarative is for communication, imperative is "gimme".]
Further, although joint attention was associated with later social and language symptoms it was unrelated to repetitive and stereotyped symptoms, suggesting the latter may have a separate developmental trajectory.
Possible deficits in psychological and neurological processes that might underlie the impaired development of joint attention in autism are discussed.
<unquote>
Source: http://www.journals.royalsoc.ac.uk/content/dh6qbh4k3cw76bnr/
MandyAnthony- Your rating scale makes sense to me. The score I got was right in the middle.
Norway mom you are the best! I save alot of your posts but Im sure Ive missed alot of them but im going to do a search then save and burn them all
Norway Mom-
I can not thank you enough for the posting of the research you do. It's almost like having a personal research asst. Everyday I find out something I didn't previously know about autism I count as a good day.
ttfn
|
Today I found an article called "Autism Recovery Possible for Some with Maturation, Early Intervention" by Jeff Evans of Elsevier Global Medical News, 4/10/2006, which touched on prognosis issues.Signs of good prognosis, according to unspecified studies: - communicative language by 5 years of age- good response to early intervention within 3 months. - higher IQs are correlated with better social, communicative, and adaptive behaviors as the child matures.
Higher chance of limited progress despite good intervention, based on the clinical experience of Dr. Deborah Fein:- "mental retardation 'across the board' " (which I interpret to mean low cognitive scores in all areas, whereas many kids with autism have a wide scatter of scores).- "dense language disorder"- intense need for repetitive behavior despite glimpses of normal cognitive potential. - presence of seizures Source: G o o g l e's cache of http://www.acep.org/webportal/MemberCenter/Periodicals/Medic al+News/pediatrics/default.htm?newsid=0c02302e |
|
I decided to post more from that article, "Autism Recovery Possible for Some with Maturation, Early Intervention" by Jeff Evans of Elsevier Global Medical News, 4/10/2006.Here's my summary of the research on recovery discussed in that article:1) A 1987 study found recovery in 9 of 19 children using ABA (J. Consult. Clin. Psychol. 1987;55:3-9) but two attempts to replicate this study's results failed. 2) In a 2005 study (Am. J. Ment. Retard. 2005;110:417-38), 23 children with autism received 4 years of ABA. 11 of them were able to attend regular classes and scored normally on tests of IQ, language, adaptive functioning and personality. Of those 11, 7 seemed recovered but 3 needed an assistant due to attentional issues and 1 would probably still meet ASD criteria. |
3) Dr. Fein published a report in 2005 (J. Autism Dev. Disord. 2005;35:525-34) where 11 children with ASD ended up at age 6-7 with clear-cut ADHD with mild residual features of autism, "such as social awkwardness (but more impulsive and immature than aloof), perseverative interests, and occasional mild motor stereotypies." There are three possible explanations for this:
... Maybe these kids had both ASD and ADHD all along.
... Maybe they had a severe subtype of ADHD that presents as autism in early childhood.
... Maybe attentional impairment is the most stubborn feature of ASD, and remains when social, behavioral and communication problems subside.
4) In an ongoing study by Dr. Fein, she looked at 77 children who screened positive on the M-CHAT at age 2 and were seen again at age 4. Of the 16 who screened positive for reasons other than autism, none of them had autism at age 4 either.
Of the 61 who screened positive on the M-CHAT because of autism, 15 had moved off the spectrum. The only difference between those who moved off the spectrum and those who remained were significantly higher motor skills (!). Otherwise, communication, socialization, symptom severity and cognitive ability were the same at age 2. Yet the recovered sub-group reached "almost normal levels" on all those measures at age 4.
5) In another study (not yet published in the Journal of Autism and Developmental Disorders when the article was written), Dr. Fein looked at 14 kids who had been diagnosed with ASD in the past, but were of normal intelligence and functioning at peer-level in mainstream classes. These high-functioning kids had normal performance on many measures, including different aspects of linguistic ability, expressive vocabulary, and sentence memory, and had adaptive skills in communication and socialization.
During the first evaluation, when this group of kids fell between ages 5 and 9, they had some limited impairments:
... trouble reasoning about animate objects (not including people).
... trouble producing good narratives, leaving out major events and characters' motivations.
... trouble with "second order theory of mind" situations, such as knowing "what does Johnny know that Suzie knows about what Rick thinks."
... trouble knowing the difference between mental state verbs (know, guess, estimate)
At follow-up visits when the group was 9-12 years of age, the only impairment left was the last item, mental state verbs!
Why are some able to recover? Fein doesn't think misdiagnosis is likely, at least not for the kids in her own studies. It is a special combination of intervention and personal characteristics? Or is it a subtype of autism, perhaps one with minimal structural brain abnormalities? Do the recovered kids do tasks using the same brain systems as NT kids?
New at Lisa Jo Rudy's autism.about.com blog:
Good News! Early Spoken Language is NOT a Key to Positive Outcomes in Autism I'm going to write several articles based on a recent interview with Dr. James Coplan, a developmental pediatrician specializing in autism. But before I do, I just have to share a few points that he clarified for me - because I believe they are of critical importance to parents of young children.
When I contacted Dr. Coplan, I asked him specifically about prognosis and autism. That is - how do we know whether a child will do well or poorly over time? Like many people, I had always assumed that a child's ability to use spoken language was a key to a positive prognosis.
I was wrong.
Dr. Coplan explained what I suppose I really did already know: that spoken language is only one way for human beings to communicate, and it's by no means the most basic - nor the most significant when it comes to measuring intelligence or anticipating longterm outcomes. In fact, as he explained, many children with autism may be extremely delayed in use of spoken language, for many reasons (physical problems among them).
Much more critical than spoken language, he explained, is use of ANY tools for communication. If your child takes your hand to guide you, he is communicating. If he uses gestures, he is communicating. If he can master picture cards, signs, or other methods of connecting with another human being, he is communicating.
Said Dr. Coplan, "You shouldn't use language as the rock to stand on to estimate a child's intelligence, because you're likely to grossly underestimate his intelligence.... [The] ability to develop spoken language varies as a result of physical and/or language disorders; but a prognosis or a measure of IQ is not dependent upon spoken language."
"They used to say 'if they're not talking by five it's a bad sign,'" said Dr. Coplan. Today, though, we understand that communication, intelligence and verbal ability are not one and the same. Even if your child is not talking, there's a good chance that his intelligence - and long term prognosis - may both be very good.
Just had to share this, as it struck me as being a real gold nugget of information for parents.
She also did mention the communicative language by age 5 as being huge in predicting long term success. I wish I knew more about that though. I am assuming that means all forms of communication and not necessarily just being able to speak.
Boobear -- Discussion is always good. I try to post links that I believe are of high quality, but it's valuable to read them with a critical eye and discuss their merits.
It's been awhile since I read the Coplan article. I wonder why they took away the diagnostic category "Autism - Residual State". Maybe they intend for the original diagnosis to be lifelong, but obviously that's not how everyone is applying it.
I do believe it's a lifelong condition, but I also believe that some people with autism can learn to function like an NT. Nonetheless, I believe they will continue to be vulnerable to mental health issues and to the return of autistic symptoms in stressful conditions, like your description of the demanding school environment in Malaysia.
Of course, there are probably many subgroups of autism that have yet to be identified, with different genetic causes and different biochemical mechanisms. The prognosis for these groups will vary, I believe.
It's natural to wonder about our child's prognosis, but we mustn't let it become a self-fulfilling prophecy. No one can foresee the future. Each child is unique, and each generation has opportunities that past generations didn't have. The future is bright until proven otherwise.
In the meantime, I think it's important to focus on realistic short-term goals, especially goals that will promote learning (like ability to imitate, understand and follow directions, etc).
On page 26 in this Google book preview of "Autism: Preparing for Adulthood", Patricia Howlin talks about factors relating to outcome. Communication skills and social skills are mentioned, in addition to cognitive testing at the mildly retarded level or above.
But she points out that quirks are more likely to be accepted if the person can make a contribution that is valued by other people, for example through special skills and knowledge. Therefore schools should focus on strengths, not just deficits.
http://books.google.no/books?id=IFq19TDSjRQC&pg=PA26& ;lpg=PA26&dq=Howlin+prognosis&source=bl&ots=MlQh zD70u0&sig=Vhel8XYcmXMgkJzPKtv1UNtcvI4&hl=no&ei= v4WNSoWkJMnajQeKgNXjDQ&sa=X&oi=book_result&ct=re sult&resnum=4#v=onepage&q=Howlin%20prognosis&f=f alse
Hi NorwayMom... GREAT to see you still contributing your VERY BEST with your LINKS to all the latest findings/news/breakthroughs..
If I may add to what Dr James Coplan mentioned in his Abstract for the Pediatrics article titled "Counselling Parents Regarding Prognosis in Autistic Spectrum Disorder"
"... individual ceases to be readily recognizable as autistic, although subtle impairment remains... "
and another that was mentioned...
"... The third edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association15 explicitly acknowledged this phenomenon, including the diagnostic category "Autism - Residual State," to cover individuals who once met criteria for autism but no longer do. This term was removed from subsequent editions of the manual and is not presently in clinical use.)
yet.. Dr Coplan has this conclusion..
"...This is the point at which the affected individual is at the greatest risk for harm from an educational system and society that do not recognize the individual's continuing need for certain forms of social support. On rare occasions, the symptoms of ASD may disappear entirely.
Now.. I highlight this statements because we have seen this before... accounts of parents with kids on the spectrum... then after a certain period involving various specific interventions... educational/vocational/biomedical... they are declared "no longer autistic".
I have an experience with a parent here in Malaysia who have such a kid "taken of the diagnosis"... That boy is a year younger than my Daniel who is ASD, high-functioning and verbal... Daniel is 10 years old this year .. BUT he is CERTAINLY struggling with his studies.
He's enrolled in a regular school which has graciously allowed yours truly (the PTA Vice-Chairman) .. to enter the class 10 min before break time and before dismissal ... to copy down all Daniel's unfinished work... Back home, my wife will struggle to teach him through the his short attention span and lack of focus.
Now education here in Malaysia is a lot of hype... it's all about A's, A's and A's. Daniel used to cream his Maths, basic addition/subtraction/multiplication and division... BUT now with problem solving involved, conversion of units.. he STRUGGLES immensely !!! That's on top of the NEAR IMPOSSIBLE task of trying to write an essay or even constructing a proper sentence from a picture !! Bottom line >> He's GONNA FAIL his academic subjects....
Now take a kid who's off the diagnosis (or CEASES TO BE READILY RECOGNIZABLE as what Dr Coplan put it, and also what DSMMD 3rd Ed acknowledged.. for a while.. "Autism - Residual State) then he or she will be treated like any ordinary NT kid.. scolded & reprimanded when they come back with red marks on their report cards... and it becomes a downward spiral for the child, education-wise... Yet Dr Coplan does add in his article... "there is predictable improvement with the passage of time". PROGNOSIS is ongoing, and unique to each individual... What we hear happening to others may not hold water for our own child.. YET, there is HOPE.. my boy used to give a terrific meltdown when he was 3-4 years old. Those days are passed now... and me and my wife are still grappling with the teenage issues that an autistic youth will face... eg: sex, girls etc It is an ongoing journey... one that we will NEVER WALK ALONE... when we have the internet and places like this Message Board to share our experiences.. Cheers from the Boobear of the East..
I was having difficulty reducing the Font of Dr Coplan's abstract which I saved on ppt file..
Anyhow, this thread is worth BUMPING for a while.. just as Nick's thread on "TITLE EDIT>Another look into a meltdown" CHEERS NICK if you are reading this... BTW Nick .. how's your playing band ?? Here's an article called "Many adults with autism beat odds, researchers find." It mentions some research in progress at the University of Utah. Here's a quote: *** "We wanted to find out, at best, what can you tell parents about what their children might become 20 years later," said William McMahon, who is overseeing the study and is director of the Utah Registry of Autism and Developmental Disabilities. In the 1980s, McMahon, worked with other researchers to find every autistic Utahn under age 25. But researchers know relatively little about the lives of autistic adults. Two years ago, University of Utah doctoral student Megan Farley began tracking down the Utah children who had IQs of 70 or above (the average is 100). *** Source: http://www.scrippsnews.com/node/36859
and if I may add... the guys like Nick and girls too (forgive me if I don't know your names) who are on the spectrum that provide a LIVING RESOURCE for us parents on how the PROGNISIS can be..
Me and my wife intend to enroll our ASD Daniel (10y) and his NT bro Jordan (8yr) in Drum classes !! Looking forward to see the glee in their eyes when they let the drumsticks do the talking !!! Here's an example of the research (you can find other studies by googling "structural language impairment"). This study found that structural language impairment was associated with a less steep developmental
trajectory, with slower improvements in autistic symptoms, and
adaptive skills in communication, daily living and socialization.
http://www.ncbi.nlm.nih.gov/pubmed/19686332?ordinalpos=11&am p;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pub med_DefaultReportPanel.Pubmed_RVDocSum
Copyright Autism-PDD.net