A Clean Bill of Health

My Son is 12 Years Old Now: Some Thoughts on Early Intervention

Charlie carrying a shopping basket at ShopRite  A new Pediatrics study of how "highly effective" early intervention can be for toddlers on the autism spectrum has been getting quite a bit of discussion in the media and blogs. The study's participants were 48 children aged 18 months to two and a half years, who had been diagnosed with autism or PDD-NOS. They received 20 hours of therapy involving ABA (applied behavioral analysis) teaching methods and developmental ‘relationship-based’ approaches, the so-called "Early Start Denver Model." The IQs and receptive language of the children in the intervention group increased significantly more than those of children in a control group (these children "were referred to community-based programs for therapy," according to a UPI article).

Charlie, who was diagnosed with autism when he was just turning two years old, started receiving Early Intervention (EI) in the form of 40 hours/week of in-home ABA therapy when he was 2 years and 4 months old. He continued to receive more than 20 hours/week of ABA therapy along with speech therapy and OT. While we never did any sort of actual "developmental 'relationship-based'" therapy, Jim and I read a number of books about Floortime by Stanley Greenspan, M.D., and much of the play that Charlie's therapists, and we, interspersed with his more formal ABA programming bore than a resemblance to Floortime-sort of methods.

Charlie certainly benefited from all this teaching, though it did not result in him becoming anything like "recovered from autism." Indeed, as I've regularly noted, he continues to have many challenges with his academic learning and to struggle with communication and social interactions. Certainly setting up all those hours of therapy and learning a number of teaching techniques made Jim and me feel that we were doing what we could, if not all we could, to help Charlie. We do think that those early teaching sessions created a lasting foundation for learning in Charlie who, to do this day, wants to go to school and does his best to learn.

Frankly, I think it's pretty difficult to argue against Early Intervention for young children with developmental delays. We can't go back in time and see what might have happened had Charlie not had all those hours of teaching when he was a toddler and preschool age, nor would we want to. I do feel a bit more than wary of any claims to Early Intervention making it more possible for a child to be mainstreamed, lose a diagnosis, lead a "normal life." Charlie received the kind of high-quality and intensive Early Intervention that is routinely recommended these days. Nonetheless,, if you've been reading this blog for the past couple of months, you know that he has very huge struggles, and some of the behavior and other challenges that are of the "textbook autism nightmare without end" sort.

I'm going to sound like a bit of a crank, but, even as it's important that more and more studies are done about the efficacy of Early Intervention, I've a growing, nagging sense that too much energy is not being focused on the areas of real and growing concern. Charlie continues to need a number of services "despite" all of that Early Intervention, and he is hardly the only getting-older-as-in-adolescence/teenagerhood/adulthood child on the spectrum who does. An article in the December 2nd Washington Post starts by noting that

The middle school years, when nothing seems more important or more impossible than fitting in, are rough for nearly everyone. But they are particularly brutal for preteens like Will Gilbertsen, whose mild autism makes him stand out.


As the number of children diagnosed with autism has ballooned nationwide, so has the population of children like Will, who are capable of grade-level academics but bewildered by the social code that governs every interaction from the classroom to the cafeteria. Not so profoundly disabled that they belong in a self-contained classroom but lacking the social and emotional skills they need to negotiate school on their own, they often spend the bulk of their day in mainstream classes supported with a suite of special education services ranging from life-skills groups to one-on-one aides.

For some students, that arrangement works. But many parents of this growing group worry that including children in the mainstream this way fails to teach them what they need to know to navigate the world independently and succeeds instead in imbuing them with a sense that they're unacceptably weird. Increasingly, Washington area educators are offering alternatives.

The difficulties faced by Will, and his family's decision to place him in a separate, special school, are very much the same as those Jim and I have faced with Charlie's education. Will and Charlie are very different in many ways, but, it seems, middle school has been a tremendous, and unfortunately insurmountable, challenge for both of them. We would like very much for Charlie to continue to be educated in a neighborhood school in the community, alongside children who don't all have his diagnosis, and in a setting where there would be many opportunities for inclusion. But doing this seems like a particularly large challenge in middle school (I can't speak about high school; at this point, it seems likely that Charlie will remain in a separate school for the rest of his education). Will was reportedly found with his head in his hands one night and said to his mother, Kathleen Atmore, a neuropsychologist who specializes in autism:

''Do you ever get so tired, and things just get so hard for you, that you think maybe you should die?'"

Wow, is all I can say on reading this. Charlie isn't able to say such, but often Jim and I have thought that he might be feeling such things at his old placement, a self-contained autism classroom in a public middle school with 1800 students. Things were just too hard.

And I've started to feel (no scientific studies to prove it), that maybe Early Intervention is Early Intervention and while it might predict how some things in the early years of school goes, as a child grows older---as a child starts to grow out of being a child---things change and you can't really predict what will happen, based on earlier, and early, progress. It's not only that the expectations and demands placed on children in middle school were too much for Charlie. The other children's needs were changing as they got older, and the teaching methods, and perspectives, of the teachers themselves changed. When Charlie was in a public middle school, it felt as if his developmental delays were starkly evident all over again; that there a gulf between him and the other children, and that that gulf only seemed to get wider. The whole situation was further compounded because Charlie entered puberty relatively early, at 11, while cognitively, he is still a much, much younger child.

Even today in the aisles of ShopRite, a woman holding a pack of Huggies maneuvered her way past Charlie, her "excuse me, sorry" suggesting that she thought Charlie to be a full-grown male going grocery shopping, not a 12 1/2 year old with a neurodevelopmental disorder whose mother was close on his heels.

Though whether without his years of school and in particular those early years, Charlie would have been walking before me in the store last night, basket in hand and easy-going about not getting brownie mix (because, as I explained, we still had a pan of brownies at home to finish)---let me just say, I'm very glad to be able to be walking with Charlie.



Early intervention... mine just turned 8 yesterday.... IMO is a means of "going through the wall"... ABA and it's unending rote learning and assumptions all autistic kids learn the same is useless after the correlation btwn signs, pecs and words is made. After that, learning should suit the child... not the program.

A severely autistic child IMO at this pt in time will never fully recover. BUT, early interventions and continued education will help to allow for a productive life where one can enjoy a bike ride, a swim, tv, movies, books, a trip to the museum... etc.. I am hoping for more.. but that is the basic goal.

IMO a child with Aspergers, HFA and NLD can do much more if they don't use these dx's as a crutch. My eldest has gone from mild PDD to mild NLD (2.5yrs to 10yrs)... it barely shows except sometimes in "off" speech and at school with his LD's - which are dealt with - his Fusion (keyboard) finally came this week. He has no idea he has a dx... it just is. IMO b/c he's never been allowed to use it as an excuse, b/c he's been taught everything from speech to social/behavioural skills... His end outcome is already "recovered".

Doesn't mean there won't be difficulties, but he's learned to deal with them, not hide behind a diagnosis and blame the "bad" on it instead of moving forward.


I'm not sure what to think about Early Intervention. I am a mother of a two year old. Seems like a lot of nice well meaning people trying to do their best in the confines of a limited system. They spend lots of time filling out paperwork and going to meetings and training. Short staffed with lots of kids on the list. I feel grateful, but at the same time want more for my child.


Excellent Post, Kristina. You never know what will happen as they get older, good or bad.

We've had Sam almost say the same thing as Will. But that was 2 years ago.

I would never have dreamed he'd be doing so well today.


A lot of focus is put on interventions where they expect the parent (mostly MOM) is available to interact with the child at home all day. This may work for the early years and well-to-do stay at home moms of one or two kids. For most families in the world, the emphasis should be put in programs where the autistic child can receive the best therapies in a school or daycare setting, throughout their teen years and beyond.


"as a child grows older---as a child starts to grow out of being a child---things change and you can't really predict what will happen, based on earlier, and early, progress."
This is so true of any child. So very true.

TH started interventions when he was just turned four, at his diagnosis. We had a 40-h week therapist as their "nanny," and he attended OT/SLP/psychotherapy several times each week. I think these interventions absolutely helped him. But I also think his having a younger brother only 16 months younger also helped his social skills and pragmatics immensely. They're awful, but I just *feel* they would have been worse without all of this.

And I also strongly feel that our interventions for our youngest, starting at age 10 months, pulled him out of a withdrawn state quite effectively. But again, "as a child grows older---as a child starts to grow out of being a child---things change and you can't really predict what will happen, based on earlier, and early, progress." Adolescence is tricky for anyone. I sometimes lapse into worrying about what our sons will become at this stage. Then, I quit because...we can't really predict.


On early intervention, I cannot help but think that a big part of what is being observed is just noise and scatter. Humans, growing up in society, tend to become more and more similar as they grow up. That is the whole point of education and socialization. An earlier diagnosis is more likely to find people deviate at that point in time, but who will conform later. For example, if you screen a hundred kids at age two, you might find ten who see odd, at age four you might find six, and at age ten, only two. So if you sample group for testing the effectiveness of programs is the ten kids found at age two, it is not surprising that you will have a higher rate of positive outcomes than if your sample group is two kids who were DXed at age ten.

We can also assume that any sample group is more likely to have a larger percentage of positive outcomes if they get more focused, individualized education. This has nothing to do with autism.

In the recent study, the test group had IQ scores 10 points higher than the control group. Considering that the base-line measurements were made at 18 months when IQ measurement is so difficult that I am not sure we can even call it measurement, and that 10 points is less than a standard deviation, I'm not blown away by the conclusiveness of the results.

On the mainstream/specialized issue, I am of two minds. Our guy does mainstream during the school year and specialized in the summers. He loves being with his autistic peers. They have interests and senses of humor that match and in classes like gym, the playing field is more even. But if the goal is for the person to live without supports in society (as the article in the WaPo seemed to indicate) then you mainstream is where that has to happen. Even when a person will probably still have access to support when they are fully grown, if nothing else, mainstreaming gives the NT kids and the ND kids a chance to get familiar with each other, so they are not strangers when they meet as adults.

But for mainstreaming to work, the mainstream must be a safe, accepting and accommodating environment for everyone in it. I want to scream when I read in the WaPo article that the challenges in the mainstream include heckling in the halls and physical fights. Then the articles asks, What are we to do with kids like this? That is not the question. The question is what are we to do with schools like this. There is no need for heckling in the halls or physical fighting to be tolerated. My son's school is completely free of that (and this is a public school in neighborhood that includes many socio-economically disadvantages families). It is free of that because the staff have made that their policy. What kids do is determined by what they are taught and what they are allowed. If there is bullying and fighting in a school, that can only be seen as a choice on the part of the administrators. And, no, that kind of environment is not ideal for ND kids. Nor is is ideal for NT kids. You can bet your bottom dollar that there will be no fighting or public heckling is the specialized schools they are talking about. The staff just will not allow it. But why make a special school when you could just fix the existing one an accommodate everyone.


Just after posting that I went to my son's school's website because I needed the number to call and set up an IEP meeting. One of the bulletins on the main page was "Hello Teachers
I have attempted to place a "diversity lives here" sticker in each and every mailbox. If you could place this on your door/bulletin board or some other high visibility area in y our classroom this would be great. If you are not interested please just leave them by the sign in.
thanks "

That is the kind of thing that you need to have going on all the time. It has to be part of a policy that is visible thought the school.


I'm not sure what I think of early intervention. IQ points don't mean a lot to me. Ability to use one's intelligence in daily life is more important, if you ask me. Also, I am convinced that our early intervention program did more harm than good to our fair boy. He saw no meaning in what they were asking him to do and so teaching became a battle. I'm not against intervention but I am most certainly against a one size fits all approach.


I have to tell you that I believe whole heartedly in EI. My oldest one was not diagnosed until he was 5 so the only services he received was some speech therapy that I paid for. Meanwhile, my younger one started receiving help from EI as early as 2 1/2 yrs. Mom and dad knew what to look for by then. My youngest never was affected by his autism as my oldest and I am certain it has to do with the help he received at such an early age. Granted the older one was able to go beyond anything that anyone expected of him(he'sin college now), but I wonder just how much easier it might have been if he had been able to get the EI he so richly deserved.
No it is not a panacea,and it cannot solve everything for everyone, but at present I think it is the best hope for our children.


As an ABA provider in private practice I have to believe in what I do (which includes early intervention) in order to function each day. With that said, my frustration with my own colleagues is never ending. As the demand for intervention programs has increased, the training and ability of providers has decreased. There's just so much crap out there. And there's no doubt at this point that any meaningful early intervention program needs to be play based. That it needs to be functionally based. The very fact that "ABA programs" are considered one sized fits all is the definition of what is wrong with my profession. The beauty of ABA is that it is so incredibly flexible and individualized. But you know what? It takes a HUGE amount of training and especially mentoring for a professional to know how to do this, as well as taking a lot of TIME from that professional on a weekly basis. So when you increase a professionals case load, promote them quicker to fill greater demand, then you get poorly trained well meaning people who's main mentorship is in how to act confident so that people will by that they are who they say they are. And if you think this is a cynical view of the landscape that only applies to a few poor providers, you're dead wrong. I've worked all across my very large state, and never seen any difference in the disasters that are being propagated in the name of early intervention; the tragedy is that EI and ABA get blamed for this, rather than poor services.

In the end, to all those parents out there, if it doesn't feel right, it's not right. If your child isn't learning to *love* learning, it's not right. If your child is spending hours sitting at a table eating m&ms, it's not right. A good EI program should be about your child having a good time, learning to love learning, and meeting goals that are important to YOU as a family. If you're a waldorf family, your provider should listen, and learn about your values and ideals and incorporate them into the program. If your family values academic skills really highly, then your provider should put some focus into this area.

I realize I'm probably ranting at this point, and I'm sorry, but the people who are providing these programs not only are often poorly trained and supervised in implementing the programs, they also have had NO training in the fact that they aren't experts in your child or your life and in the fact that you, as parents, are a more important part of the equation than they are. EI is serious business, not just a lark, and if providers were given the training and mentorship that they deserve, parents and kids would be having very different experiences.


Did Charlie make amy friends in his former middle school? How does he feel about his peers in general? Is he interested in interacting with other kids his age?
The autistic students I used to teach had varied reactions to social mingling. The lower functioning ones either ignored other kids almost entirely, except to act agitated or aggressive if one came too near. The higher functioning guys seemed interested in hanging out like "normal" teens but they had little idea how to go about it.
Asking what sitcoms were on TV that night and quickly supplying the answer before the other kid had the chance to respond was one guy's m.o. It left the neurotypical kids bemused and they usually made a hasty retreat.
I guess social stories and practice in the give and take of conversation helps somewhat but for those to whom it doesn't come naturally socializing is bewildering. it's a shame because the isolation and loneliness some autistic kids experience is sad to see. Humans are social animals and teens, especially, need to be with other teens and not exclusively with mom and dad
This isn't a criticism of how you raise Charlie I'm sure you'd like him to have trusted friends his own age. it's how to bring that about that's the problem.


Seems to me like EI is decently-funded at federal level, and SPED is not. I think that has a lot to do with why there's so much emphasis on EI.

We didn't get any EI (our pediatrician talked us out of having him assessed--he's just a boy!). So yeah, this EI stuff can tweak me out a bit. But I try to remember that we do the best we can when we can. And that's the best we can do.


A growing lad, but those interventions are every bit as necessary.


My guy had no EI and was under the radar until middle school where he was grudgingly given an IEP. He is now seventeen and we just recieved a packet about transitioning. To say I am shiite scared is an understatement. As I said to a friend - at least he had a safety net in school; yes I had to roll out the safety net by myself and hold it up, but it was there. According to the info we received, he is not eligible for anything. He is "too high functioning," "too not applicable for SSDI because he never worked," "too wealthy because his Mom has more than X amount of dollars in an investment for retirement (less then 150K which as we all know will have me wildly rich)."
I get now, the invisble auties. My son just became one.


We had early intervention coming out the wazoo after my kids were diagnosed at 2- speech therapy and OT for sensory issues were definitely the most useful, and ABA was okay for one child and very detrimental for another. I do think that EI helped them for the most part, but wow, now that they're in high school, life is scary.

I'd always heard about the "cliff that you fall off" when you graduate to adult services, but the fact is that in any school district that I've heard of yet, the services available in high school dwindle to a ridiculous degree. My guess is that in 20 years or so the high schools will have gotten "caught up" a bit to early intervention/elementary school programs and services, but at the moment I'm wondering why the government even bothered spending the money and energy on early intervention if they were planning on leaving the kids with nothing as they hit puberty.


I am studying to be an early intervention specialist and have been reading this blog since I made the decision to change careers two years ago. I was resistant to learning about ABA at first, then I saw how amazing it can be - if done well, and how harmful it can be if done anything less than well. Maybe I will become jaded when I'm out in the field, but at this point early intervention means meeting you, learning as much about your child and your dreams for him as possible, and using whatever knowledge and resources I have to help him to have a meaningful life both now and in the future. Anything else seems like "early interference" to me. That's why I need to be here, following Charlie's story and seeing the process from the point of view of a parent. I don't want to forget when I'm on the "other" side.

On the other hand, I think it's very sad that services dwindle as children get older. I know very few people of any developmental profile who wake up on their 21st birthday knowing how to cook and manage money and get along with coworkers and do all of the other things an adult is "supposed" to be able to do. I'm 40-something years old and can honestly say that I'm still learning.

I think the standards for inclusion - and the mandate to support them financially and with services - should extend well beyond school-age years. The result may be more well-meaning providers trying to impose inappropriate interventions, but that's where we all (parents, teachers, and anyone else who is involved) need to roll up our sleeves and do the messy work of communicating and advocating and sometimes arguing and fighting for what is going to help us to all be more human. Kristina, I commend you and the other parents out there for doing this every day. Keep talking, because some of us (most of us, I believe) are listening.

Dwight F


I don't know if you'll catch this or not. You were talking about "more". The best "more" you can do is to make sure YOU are trained. Until recently we lived in Alberta and it has quite good early intervention services through a couple government agencies (it's split up on academic and general home/living skills). The services themselves are provided by private professionals, private agencies, and pre-schools (private and public). One thing that this 3rd parties are mandated to include as part of the services is instruction to the parents. Since this funding usually ends on the 6th birthday (you switch to a different funding programs, though the money/services are usually somewhat tighter) the idea is to prepare the parents to take up the mantle somewhat. It goes so far as a hard requirement that a parent must be present for a certain percentage of the time the home aid works with the child. As well it's helpful so the parents can carry forward a lot that is learned about the specifics of the child. Sort of a living file, if you will.

My wife and I really embraced that, going even further than the aids and other support workers did, and I think it's helped a lot. Stuff we learned years ago is still very applicable now, not only helping us at home solve issues at home and helping G continue to grow but also for troubleshooting issues that come up at school.

Estee Klar

Great post. Adam has had "early intervention" from the time he was 18 months of age. We created a program that was suited to him, and he does not go to an ABA school, but he has had been in intervention programs practically his entire life. I do not believe that ABA or one intervention is the Holy Grail, but teaching and engaging is important as is understanding how to teach a unique individual who happens to be autistic. Adam would not have responded to many of the methods of ABA because he had high anxiety levels, so we leveled that off and learned to engage him in ways that he could tolerate and actually learn what we were trying to teach him.

He attends a private school that for now is a dream because they practice full Inclusion and let us appoint his shadow. I have worries about middle school and high school as would any other parent here. I want Adam to stay on his steady path. I pray we do this for all families.


I am a fan of early intervention, when interpreted as "paying attention to your child's needs and supporting them in an appropriate matter as soon as possible." But this, as Estee has pointed out, cannot be a cookie cutter approach. Our kids are too different from each other to learn in exactly the same way.

I worry that parents who didn't pursue EI now think a magical window is closed. Not true. Our kids' learning and skills can be supported at any phase in their lives -- even as adults. That's a message I wish was spread more widely.


P.S. Love the picture of Charlie. :)

Kristina Chew

It's never too late to get started, to keep trying, I think! Thanks about the photo!


This is rather late, but as a parent who has had good experiences and can see what can result from well-implemented ABA, and had bad experiences with poorly-implemented ABA (even if "well meant"), and know enough about the field to know exactly what you are talking about and why those who would try to provide effective, competent and ethical services are also out there tearing out their hair, I want to say -

Thank you.


While the ESDM study is interesting for the very early age of the participants and use of the particular experimental design, it hasn't been replicated, and as of yet there has not been direct comparison to anything other than "community placement" nor longitudinal followup. This isn't to throw cold water - even the authors note some of these caveats in the text.

This may be somewhat tangential, but on a personal basis, despite some mixed experiences with EI, the net has been positive, and those collateral benefits still carry over.

On a less personal basis, a couple of years ago I had reason to carefully go through the oft-cited report "Educating Children with Autism", and the bibliography. What was *interesting* was that the primary research that formed the basis of recommendation for young children often was from those in the school-aged, teen and adult populations, with some supposition of extrapolation to those young children in making the recommendations. So while there might be indications that early intervention gives bigger bang for the buck via early experience, plasticity, etc., it certainly seems to not be the case that application of the strategies to children beyond the age of 6 or so is meaningless or not worth making allocation for.

On a more opinionated basis, I would challenge anyone to make the case that learning stops at 6 or 7. Our personal experience indicates otherwise.

Kristina Chew

I hadn't noticed that about the primary research in "Educating Children with Autism"---must go back and look. Makes me feel a lot more hopeful.

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