Adult Outcomes in Autism: A Prospective Longitudinal Examination of the Effects of Early Intensive Intervention: A 20 Year Follow-Up

18 May

It’s been over 25 years since Ivar Lovaas published a study on Applied Behavioral Analysis which would made ABA therapy (for good or bad, you can find vocal proponents of both opinions) the “gold standard” for young autistic children.

Now, some of the children who participated in the early studies and ABA programs are adults. Bryna Siegel, a professor at the Univerisity of California at San Francisco is presenting preliminary results on adult outcomes at IMFAR. I’ve been waiting for the abstract for some time since reading the title of the talk online. Unfortunately, the work is obviously very preliminary. One can hope that more will be presented at IMFAR and more will come.

B. Siegel1, T. Sendowski2, O. Park3, S. Radhakrishna3 and W. Phuchareon3, (1)University of California, San Francisco, University of California, San Francisco, San Francisco, CA, United States, (2)Child and Adolescent Psychiatry, University of California, San Francisco, San Francisco, CA, (3)Children’s Center at Langley Porter, Child and Adolescent Psychatiry, University of California, San Francisco, San Francisco, CA

Title: Adult Outcomes in Autism: A Prospective Longitudinal Examination of the Effects of Early Intensive Intervention: A 20 Year Follow-Up

Background: In the past 15 years, estimates of autism prevalence have increased to as high as 1:110 presently (2008, CDC). Utilization of special education, speech and language therapies, social skills training and occupational therapy by individuals with autism has increased dramatically, yet little is known about long-term effectiveness of this costly resource allocation (GAO, 2005). It is known that 95% of California adults with autism are unemployed and not living independently (SMART, 2010). Young adults with autism who are now 21-26 years old are the first cohort to have received early intensive behavioral interventions (EIBI), now the legal standard for a ‘free and appropriate public education’ (IDEA, 2004). It is now critical to ascertain whether this cohort, the first to receive EIBI, is better prepared for adulthood as it makes this transition.

Objectives: This preliminary study will examine whether 1) pre-treatment diagnosis and cognitive characteristics, or 2) receipt of EIBI or not, accounts for the most variance in adult outcomes.

Methods: We used a prospective longitudinal methodology relying on archival data from the UCSF Autism Archive. The archive includes initial diagnostic and cognitive assessments gathered by primary clinicians when these, now adult, subjects were 0-5 years old, as well as data indicating whether EIBI or less intensive interventions were then being used. Ss were re-contacted as adults, along with their caregivers, and new diagnostic (DSM-IV, ADOS), adaptive behavior (VABS), and status variables (living situation, employment) were collected. Data on interim treatment intervention were collected based on caregiver report. Intensity of services were indexed by numbers of a) one-to-one treatment hours per week b) total treatment hours, and c) ratio of one-to-one hours/ total treatment hours. This is an important study as pre-treatment data and treatment status data were collected prospectively.

Results: To date, we have identified 49 Ss initially seen at 0-5 years of age, before initiation of any EIBI who remain in our catchment area. We so far, have re-contacted 8 families scheduled for the post-test assessment. Telephone interviewing suggests some of these Ss were 1) low functioning initially, received EIBI and remain low functioning, 2) that some were high functioning, did not receive EIBI and remain high functioning, and 3) that some were high functioning, received EIBI and remain high functioning.

Conclusions: We will present preliminary findings on a small sample of at least 20 Ss that represent these three groups and provide preliminary discussion of pre-test and treatment data that may explain outcomes.

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11 Responses to “Adult Outcomes in Autism: A Prospective Longitudinal Examination of the Effects of Early Intensive Intervention: A 20 Year Follow-Up”

  1. Anne May 18, 2012 at 08:04 #

    Am I getting the right impression that (at least in this tiny group studied), EIBI was not found to improve daily functioning of autistics?

    Is this because autistics can’t improve their skills, or because EIBI tends to focus on “quiet hands” and similar normalization instead of improving useful communication and real-life skills?

    I know of (personally and through their writing) more autistics than were interviewed for this study who definitely improved as a result of parents and teachers working with them in ways that may not qualify as EIBI.

  2. Laurentius Rex May 18, 2012 at 21:10 #

    Aha it is that time of year again is it.

    I call this the “IMFAR effect”

    Oh well I can’t see my ever getting a paper accepted at IMFAR, I did not even bother this year. I’m content to do the disability studies circuit, I have an interesting one coming up in September, “The social construction of the Savant” it won’t be what some people want to hear, and if I am lucky I will be doing a political later on.

  3. stanley seigler May 19, 2012 at 04:43 #

    @LBRB It’s been over 25 years since Ivar Lovaas published a study on Applied Behavioral Analysis which would made ABA therapy (for good or bad, you can find vocal proponents of both opinions) the “gold standard” for young autistic children…

    25 years would be 1987…my daughter and some of her peers received lovaas’ ABA at UCLA around 1968-80…anecdotal evidence does not indicate ABA was a gold standard…except in the opine of the ABA promotional scientists…

    any studies to indicate long term result of ABA (1968-80) on classic kanner autism…specifically the non verbals…

    • Sullivan May 20, 2012 at 04:05 #

      Stanley seigler,

      I think you hit on the reason I put “gold standard” in quotes.

      Word from the conference is that the poster was still very preliminary.

  4. stanley seigler May 20, 2012 at 19:53 #

    @Sullivan: ‘ “gold standard” in quotes.’

    getting old(er) missed yo point of quotes…

  5. Corina Becker June 8, 2012 at 05:44 #

    I actually tried to talk to the person at this one; couldn’t seem to get her to talk about findings, kept insisting that the autism diagnosis criteria was different then from now… It was frustrating to talk, cause I wanted to see whether the EIBI or whatever, actually helped in the long run, especially all the bad things I know happened. She seemed kinda fixated on the fact that I’m Autistic… One of the few discouraging conversations I had.

  6. Austin June 8, 2012 at 08:08 #

    So is everyone demonizing ABA because of preliminary findings based on an ABA modality thats been out-dated by about 40 years. Seriously! How about we study the effectiveness of cancer treatments 40 years ago- I imagine the remission rate was much lower so therefore lets not treat cancer at all. We are talking about an attack on ABA early intervention techniques when ABA was barely out of its infancy. As an ABA therapist I have watched archived videos of ABA treatment from the 70’s, 80’s, and 90’s and some of it is rather shocking. ABA like any evidence based science grows over time, we learn from the mistakes of the past and the mistakes of others; just like modern medicine. I have worked with children, adolescents, and adults who have been all over the Autism Spectrum. And whatever their skill deficits; we would make a step by step program on how to effectively teach the individual the necessary “tools” in order to improve his/her independence. When a child who is essentially non-verbal and you have been modeling “mmm” in order for the child to say mom for the first time and after 4 months he/she at last successfully imitates the sound; what other “cure” or “treatment” would you suggest to illicit vocal imitation. And by the way, two months later that child said “mom” and you sit on your high horses mocking the very treatment plan that aided a child to say mom and a mom to hear that word. I guess i cant blame you, like most, you find it easier to write the child off as mute and move on. Anyways, my apologies I dont mean to get personal but I dont understand why ABA is so criticized when there is no other treatment model that works much less back by years of data. I’m sure right now there is something that can be improved upon in ABA but anything science can use that- its called growth. Hell at least we dont prey on the desperate parents telling them that if you just put the magnets here, or let me massage his head that cured Autism in a friend’s son, its disgusting. So I ask this, if not ABA, then what?
    Oh, Miss Becker I must apologize for the individual you spoke too, we unfortunately do have the “therapists” who are not only terrible practioners of ABA but really shouldnt be involved in working with people at all; again i am sorry for how that person treated you. And you know what, according to new diagnostic criteria i have Autism as well. I was diagnosed with adult ADHD when I was 22 and ADHD has now been placed in the realm of an ASD. Which makes perfect sense to me, for example I flap my foot, rather intensely too. And there is no difference between me flapping my foot and an individual with Autism who flaps his hands. If you observe behavior as much as I do you actually begin to notice those things, how similar yet intensified someone’s behavior with Autism can be; but is there any difference between that individual who bites himself till he bleeds and an “atypical” person who cut themselves in private. No, there is no difference. After years of observing human behavior I have come to the conclusion that we all have Autism; some are higher functioning than others but every human being is on the Spectrum. So Miss Becker, do not be discouraged because that person’s Autism came out when she was fixated on your Autism, and in the DSM continued fixation that disrupts atypical functioning is a symptom of Autism.So, give another ABA guy a chance; I would be happy to answer any questions you may have or help in anyway.
    Another thing, Anne, I am sure when you were in gradeschool that at some point a teacher asked you to sit still; that is no different than teaching “quiet hands”. Besides how is this child supposed to learn how to write, hold a fork, type on a keyboard if he has never been taught to master his own hands. Human Beings do everything with their hands, so I would say yeah keeping your hands “quiet” is a rather important skill. And if parents and teachers came together and successfully taught the child skills which he would not have learned on his own, that is early intervention. Those people found a way to reach the child (more than likely through edibles or perhaps a favorite toy- which is called a reinforcer in ABA, which is kind of a cornerstone of behavioral theory). Those parents and teachers practiced ABA without knowing it, which is something people do all the time. Example: Child wants candy, parent says no, child throws a tantrum, parent says fine and gives child candy- what did the child learn? Hey, all I have to do cry and scream and I get what I want. ABA without knowing it, very poor ABA but ABA none the less. Now, model a replacement behavior such as reciting ABC’s or counting to 100 and then when the child finishes give him his candy. That is pure ABA, using a very simple formula, we have taught the child 2 skills (ABC’s and counting) while at the same time preventing his tantrum and also teaching the child that “hey if i just do what they ask me I get whatever I want”. Wow, i know, ABA is such a terrible thing that poor child, learning and getting candy while not engaging in inappropriate behavior.
    Well I really meant no personal attacks but when the only effective treatment model, for individuals whose potential is just waiting to be realized, is under fire I do take it personally. Have a good evening.

    • stanley seigler June 8, 2012 at 17:10 #

      @Austin: “I dont mean to get personal but I dont understand why ABA is so criticized, etcetc…So I ask this, if not ABA, then what?

      we all need to get personal, but not paranoid re ABA or any program…

      my personal heart burn is with the ABA ‘promotional science’…ABA has been around in some form (eg, a teaching tool) before it was ABA and promoted as the cure all by many who were motivated by greed more than compassion…

      believe the ‘promotional science’ phase … ‘when ABA was barely out of its infancy’…is recognized by those (like you) who care more about our children than owning a porsche 911…and/so;

      we are moving on to ‘what then’ programs…combining ABA with other techniques…especially those that recognize the importance of improved communications…

      sadly there are those still living in the age, ‘when ABA was barely out of its infancy’ … and so very unfortunate for our children of that age…those who, eg, learned to button at 4 but cant button at 44.

      ‘when ABA was barely out of its infancy’ is similar to the age of ‘refrigerator parents’ IMHO.

      another re

      re: we unfortunately do have the “therapists” who are not only terrible practioners of ABA but really shouldn’t be involved in working with people at all…

      these people should be stock brokers…and are the ABA promotional scientists.

  7. Hillary C for president January 5, 2014 at 08:27 #

    Autistic persons in California who need nursing care supports to live at home have been forced to accept out of home placements in violation of Lanterman Act. This practice must stop, as parents of autistic persons with epilepsy have a right to have the supports and services they need to keep their autistic children or adults at HOME.

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  1. Autism Blog – Adult Outcomes in Autism: A Prospective Longitudinal … | My Autism Site | All About Autism - May 18, 2012

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  2. “I’m Autistic!” – struggling against invisible disability, fighting for acceptance | Sonnolenta… A Neurodivergent Journey - December 31, 2014

    […] There is an unreasonably high level of unemployment amongst Autistic adults. I’ve seen stats that refer to 90-95% numerous times. Employment is a challenge for Autistic people, there is no […]

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