A new study from Washington University in St. Louis has confirmed what a lot of us suspected about the developmental nature of autism: that it gets ‘better’ with time. A quick quote:
Like most people, individuals with developmental disabilities such as autism continue to grow and change over time, Shattuck explains: “Their development is not frozen in time and forever the same. That’s just not the case.”
So, contrary to the oft-espoused crapola from the anti-vaccine/autism groups (TACA, Generation rescue, SafeMinds, NAA, Treating Autism) that our kids will be stuck in this non-developing situation forever, actual _science_ – when it looked at the question – found that the direct opposite was true; that autistic people develop as they get older.
You won’t be surprised to hear me say that, for me, this casts extreme and renewed doubt on the claim by the chelation/lupron/HBOT extremists and child-experimentalists that without the miracle cure du jour their poor, poor child would have just rotted away. In fact, next time someone claims to you that without treatment X their child would not have progressed, please point them to this study.
For all major symptoms, the percentage of people who improved was always greater than the percentage who worsened,” Shattuck says. “If there was significant symptom change over time, it was always in the direction of improvement, though there was always a group in the middle that showed no change. The mean never went down.
Lets be absolutely clear about this study though – it does not claim that (as you can see from the above quote) – that every autistic person changes. It would be strange if it did. In all walks of life there will be a group who do not. But it is clear from the presented results that improvement over time is a regular and common feature of autistic development.
Left Brain Right Brain 
The thing that struck me about the findings was that the “retarded” autistics did the poorest. But the “retarded” are very likely to have had their intellignece very much underestimated because of the way IQ is (badly) tested in autism. And once the kid get’s seen as belong in the “retarded” bin he may not be offered the same kinds of experiences as the ones who didn’t get the label.
The “retarded” label is a confound. It must be. It’s not that there are no low IQ people in the world, that genius lurks inside every developmentally disabled person, but the more “retarded” a person is believed to be, the worse they can expect from life. I would expect a non-verbal (not given any way to communicate) person might get tons of abuse, after all, he can’t report what happens right? So if there’s a “retarded person” who screams and bangs his head when the new “teacher” comes in the room, is that because he’s “retarded” or because the teacher has been abusing him?
Still the study manages to add what many people already know. The “early intervention” mania is being oversold.
Jenny McCarthy’s big thing is, “you’ve got to be like ME and reach in and pull them out through the window before it closes.” Oh, yeah, and “vaccines are probably, surely, almost definitely the thing that put them in the walled room with the small and rapidly closing window….” thanks, loads, Jenny and all the media who have been giving her a platform to spout this trash from.
I don’t see my son trapped or think that there’s only so much time to help him. People change and develop over their whole lives and learn new things their whole lives. It doesn’t mean I don’t help him, but apart from the Makaton and pictures/objects most of the things we do could be done with a typical child of his age. Sometimes I find myself thinking “hmmm, does this softplay session count as helping his co-ordination” and then I realise “well, it might, but the main thing is it’s fun for him”.
He’s progressed from a lad who didn’t understand anything of what was expected of him at his nursery to one who loves the singing sessions, helps with the photos for “planning time”, smiles at the bus driver, parallel plays alongside other children and loves to paint and build.
I have always said, the word autism and the word cure just don’t go together in the same sentence. Autism is a development disorder. ‘Development’ can’t be cured, it is all about change over time. I agree with bullet, my son isn’t trapped either. And he certainly doesn’t need curing – what he needs is love and acceptance.
I’m not sure why this is considered a new finding. See, for example, Pry (2007), Charman (2004), … I won’t post more because I’ll get into the spam trap, but you get the idea. There’s considerable prior science on the topic. A better question is: What gave anyone the idea that autistics are frozen in time?
This is just more support for increased study and work in educational therapies. I hate to get on the soap box again, but damn it, attention (which means money)needs to be placed in the classroom. Bad educational therapy or no educational therapy means less improvement hands down. Most SpEd classrooms consist of a spectrum of learning disabilities thrown together which makes for a very challenging work invironment for the special education teaching professional. At best some districts try to group many of the children that are autistic together with an autistic specialist but this is a mixed bag as well, seeing that there is little training available in the area of autistic development (yes this is some but it also depends on how good the teacher is as well).
Retarded autistic’s????????
I have to say I am not familiar with that label. There are more symptoms in the classroom with behaviour issues that interfere with learning than in anything else concerning diagnosis (for the most part). More teachers (newbies and experienced alike) have serious defeciencies in the area of getting past behaviour problems that interfere with learning.
Unfortuntely, behaviour is another area that has a stigma attached to it – bad behaviour viewed by a teacher is just a stubborn independant child to some parents.
Needless to say Stephen would not be a child that would have been thrown into the retarded catagory. At least not for very long…..
http://thinkorthwim.com/2007/01/28/stephen-wiltshire-the-human-camera/
I’ve been told that if my autistic kids arent on gfcf, or doing chelation or whatever then their neurological systems will continue to degenerate over time and their symptoms worsen. it is a relief to see what i have observed with my own eyes that my kid progresses just as any other would but at a delayed rate.
There may not be a window of development, but there is likely a window of perception. For parents of very young kids one race is to get a kid as far as possible before school–kindergarden or 1st grade. The perception is that once in a placement it will be hard to get out.
There is a recent study that showed that kids tend to stay in their first grade placement. There wasn’t a good correlation in ability and behaviors and whether a kid was in a mainstream or special ed placement
“I’ve been told that if my autistic kids arent on gfcf, or doing chelation or whatever then their neurological systems will continue to degenerate over time and their symptoms worsen. it is a relief to see what i have observed with my own eyes that my kid progresses just as any other would but at a delayed rate.”
When people tell you things like that, you should ask for the actual study or studies involved.
In this case, for example, there are no studies that show anything of the sort for GFCF or chelation.
If there had been, Jenny wouldn’t have said, “Evan is my science”. She would have said, “The science backs this up.”
I do’t see anything in the article which argues against early intervention. It is calling for additional programs to help adolescents and adults. Also please note the statement at the end of th paper that the majority of the subjects remain significantly impaired and dependent on others.
I am the father of a 10-year old daughter with classic autism. Not only is she non-verbal she is almost non-communacative. IQ if I can remember is somewhere between 28 and 51. Although ,I don’t see how they can measure that in a non-cooperating person.
She has made wonderful progress in her maladaptive behaviors, but very slow mental progress. In her younger days my arms use to bleed from her scratching and by shoulder bore the bruises of her bite marks. However, every year those behaviors subsided, and she began to return the love my wife and I have given her.
She is a lovely and loving child. I expect she’ll end up institutionalized when we can no longer care for her. I don’t like that one bit.
The hardest thing is trying to find a method of teaching her. Her apathy is nearly universal. We’ve found she learns best things she does every day as part of a routine. She’s in an excellent program at her school and with a dozen or so more years who knows whe she’ll grow up.
Now you can say my daughter’s problem is her mental retrdation and not her autism. I know quit a few specail needs children. Mentally retarded children without autism are eager to learn and want to be with others. Children with classic autism do not. These are generalities not absolutes. The lack of desire to learn stems directly form her autism, and that is one of the hardest things to deal with.
Cure, sure I’d accept a cure. However, i don’t see anything out there. What parents want is to move their children up the spectrumenough that they can fuction in society. There is no magic bullet, just lots of work, and taking advantge of available programs through school districts and regional centers.
My daughter is not defined by her autism. It is a condition which needs to be mitigated if. not ended.. Parents with low functioning children woud love for their children to sing the praises of being autitistic. However, our children don’t have voices. All we can do is follow the research apray for breakthroughs, and contiunue to love them with all our might.
Ian
“The hardest thing is trying to find a method of teaching her. Her apathy is nearly universal. We’ve found she learns best things she does every day as part of a routine. She’s in an excellent program at her school and with a dozen or so more years who knows whe she’ll grow up.”
The universal apathy is a very difficult barrier as well as the fixation and routine issues. Most all autistic children are annoyed or rebel against “something new” or a break from thier normal routine. Some parents will go as far as to feed thier child a balogna sandwich everyday of the week because “thats all they will eat”. There is a point where this obviously can get to be a hinderance to development. Many Special Ed teachers will try and make the effort to change thier routine (as difficult as that is) in order to acclimate them or adapt them to accept something new thereby teaching them something new. I like to hear good stories of progress and to hear your daughter is in a good program and is making progress is always great news. Keep up the hard work.
Ian, I appreciate your candour but I find myself sighing at the attempted segregation you try between your daughter and ‘our’ children. This is not the case. Every behaviour you describe we have seen from my daughter. She is also considered (by IQ measurement) to be ‘retarded’ (in US speak).
We also see improvements all the time and yes, we have also fought long and hard for them – but not as hard as she has.
I don’t accept your idea that your daughter will automatically end up in an institution although i realise that the US and the UK may have differing ideas of what to do with their autistic populations.
However, this study, to me is another message of hope and confirms what we see every day – with hard work and a willingness to accept and work with our autistic daughter (and to me, as she _is_ autistic her autism plays some part in defining who she is in the same way my masculinity plays some part in defining who I am) and play to her strengths we can further and further away from the bleak foretelling of my daughters future as one of institutionalised care.
At the same time, we have to (as a community) recognise that our society does seem to want to put people in institutions and we have to work hard at changing the perceptions of the public and the politicians of institutions being the best option. There are lots of other options that would be better for autistic people I think. This is another area where we should listen first and foremost _to_ autistic people.
No study is going to argue against early intervention. The problem is that the studies will tend to overstate, or grossly overstate the glorious promise of early intervention.
If you compare a kid gettting input from parents like “Look! See the doggy!” or “Here, take this block and stack it on that block… wow! you did a great job, now try to do three blocks!” Which I consider good parenting of a baby, not “early intervention”…but if you compare that early intervention with a disabled child being totally ignored, like abandoned and left in a closet all day… yeah, that early intervention makes a massive difference.
But comparing more or less normal parenting techniques (not the parenting of a parent wo is totally wasted on drugs all the time, or gravely mentally ill and thinks their child is a mushroom, or leaves the child in an abusive day care environment while he goes to work…) to the 40 hour a week or 20 hour a week of “intensive” intervention, I don’t see any reason to believe it makes a HUGE difference, unless the adults start to look at the kid who has all the interventions as someone who better pay off since they’ve put all this time and money into him, so they keep the expectations high, as opposed to the kid who had parents who were just good parents but everyone else says, “well, that kid didn’t get the early intervention, oh, well…”
People will ignore abilities in a child that are plainly there (not talking about Ian McGregor and his child) and sentence that child to being seen in a particular way. Put them in the “not smart” bin and forget them, or keep seeing every little advancement as a “miracle” to be encouraged.
I had this perception of my child since xe was hyperlexic that my kid was a mini-genius … even though the kid couldn’t do the mini-genius workbook I bought for advanced pre-kindergartners or something… and when the kid entered kindergarten and had an IQ test I was shocked at how low it was. It was strange for me, not an insult because I believed that they had found what they had found, but I had a hard time reconciling it to the kid who was such an early reader.
My kid still has problems with understanding the content of average reading material but can read just about any university level text aloud perfectly with proper emphasis and everything. There’s a kind of genius there in my kid, it’s just not in the reading where I thought it was, and it sure wasn’t in math or writing, or science… it’s just different. My kid is just amazing and perfect and sweet.
I shudder to think what a different set of parents might have done with/to my kid, seeing my kid as the result of so much genetic rubbish.
I have no idea where my kids’ intelligence would be if I hadn’t been doing “interventions” with both of my kids from the time they were born. Literally, I was trying to make them be smart kids from the time they were born. I was big on giving them the right kind of intellectual stimulation. I just didn’t think of it as “early intervention.” And it wasn’t “intensive” in the sense of “painful,” as I think of 40 hours a week of anything, especially DTTs.
That’s very encouraging.
At my workplace we have a more-autistic fellow than I come in twice a week, and since working with us (I am the only diagnosed Aspergian there) he has shown marked improvement, we are told. I relate to him pretty well, and have over time been able to cut through some of his bullshit, and he some of mine. 😉
Kev and Uncle D. Thanks for your comments. I said I expect she’ll end up institutionalized, i.e, chances are not a certainty. Where do you get the idea that our society wants to institutinalize people? People with autism need various levels of assistance from none to trivial, to group homes to 24-hour care. Society should be giving folks the care they need once their families can no longer do so. Society ofen fails in this goal. However, it fails in giving too little, not too much.
You say we should listen to autistics. Well, yes, but no more than other people. Just how does autism define my daughter, and how will she be negatively impacted, if a miracle happend and she came back from school today an NT child?
It is a spectrum disorder. Folks who are autisitic in nugatory terms probably bristle at the term disorder. People who are profoundly autistic or rather for those who care for them are bristle when folks claim that autism is a good thing. Where you or your a loved one is on the spectrum probably controls what gets your hackles up.
One thing is true the prospects for some instantaneous cure of mitigation is fanciful. However, all research indicates that the earlier intervention is begun the better the prospects of moving that child up on the spectrum. This is not to say I think my daugher is by any means stuck. There are however milestones she has missed which indicate her chances of becomng a functioning adult are not good.
She’s being an abolute angel right now, She sits with me i an oversize chair and likes to have Dr. Seuss read to her. She isn’t good at all at finding the Cat-In-The-Hat. She’s all smiles when I sign to her and gets a close as she can.
Her receptive language skills have increased tremendously . Again, we have not found any method for her to express herself.
We had her to see a genetecist yesterday at UCSF. No fragile X, or irregukar karryotype. There looking for repeats at location 15Q and other chromosonal abnormalities. The Doctor doesn’t think she’ll find any. But the real story was when my wife took her back to class, the teacher said that my daughter was in charge of serving the drinks yesterday at snack time, and handed the right cup to the right child. This is huge, she is beginning to see people as individuals.
On routine, she is actually quite accepting of routine changes. What we need to do is to expand her routine so she can do more for herself. It;s no good trying to drill things into her. However, if we make something part of her day there’s a good chance she’ll pick it up.
I also don’t see the revolutionary insight here. Perhaps since I don’t have an autistic child, I don’t see that kind of pressure to do experimental treatments. On the other hand, one of my children is slow to talk, and I got very mixed advice from different people as to how to address the issue. A lot of people say the same thing: address it immediatly before it cascades into greater problems, others say, let it develop and it will come naturally.
I think it should be obvious that human beings in general continue to develop over time, including well into adulthood (with a few exceptions, where some people seem to stop maturing around high school), so why wouldn’t that apply to Autistic people as well? However, it is also widely accepted that certain things develop much more rapidly in early childhood, and are much harder to change later in life, so if there is a problem that can be addressed, addressing it earlier rather than later makes logical sense.
From this perspective, I can understand the feeling of urgency to deal with health problems as early as possible, because unaddressed problems can get more complicated or harder to address as time goes on.
So I choose to undergo language therapy WITH my child (since I’ve learned how much influence as a parent I have on the whole thing).
However, I tend to find myself fully agreeing with some things Kev has written elsewhere on this website. For Autistic children, you should invest effort (as quickly as possible) into addressing known physical health issues (non-Autistic) that are recognizable, and should be treatable to some degree whether they are thought to be related to the Autism or not.
Where I tend to disagree with Kev is the equally broad strokes he applies to all of the organizations listed in the article that most people here have some issue with. I am personally skeptical that they are all completely unscientific, stupid, and unethical in their quest to solve their own children’s health problems. But I don’t have the same personal experiences and I figure there isn’t much point in arguing a bit of an embellishment.
Am I totally weird? I couldn’t care less about Oprah or Jenny McCarthy if I tried.
BWH – you’re not weird, you’re the sanest person here ;o)
Schwartz – I commend your scepticism but its been my experience in dealing with, talking with reps from and seeing the effects of all these groups that whilst they might not be stupid, they behave very stupidly. They are most definitely not scientific.
I have grown to wonder very much about what their priorities are and whether they really are about autistic people or whether they are about winning a battle they are now too emotionally invested in to see they are wrong.
For most of the people running these groups, they have been involved in their antivax crusade for almost 10 years now and they still lack any credible science of any kind that even hints at a causative relationship between autism and either thiomersal or the MMR. Enough is enough. Time to move on.
“She’s being an abolute angel right now, She sits with me i an oversize chair and likes to have Dr. Seuss read to her. She isn’t good at all at finding the Cat-In-The-Hat. She’s all smiles when I sign to her and gets a close as she can.”
She sounds lovely :). My son likes Dr Seuss as well. His poems/stories have such a lovely rhythm to them.
If she likes rhythmic stories then she might like the following if you’ve not already read it:
“Brown Bear Brown Bear What do you See?”
Lots of colours, lots of repetition and quite funny :).
In reguards to mercury in vaccines, check out todays NEJM, 3 papers available free.
Very interesting, Ruth. Thanks for the heads up.
Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years
and two commentaries on the vaccine court system. One by Paul Offit.
the conclusion of the paper?
“But comparing more or less normal parenting techniques (not the parenting of a parent wo is totally wasted on drugs all the time, or gravely mentally ill and thinks their child is a mushroom, or leaves the child in an abusive day care environment while he goes to work…) to the 40 hour a week or 20 hour a week of “intensive” intervention, I don’t see any reason to believe it makes a HUGE difference, unless the adults start to look at the kid who has all the interventions as someone who better pay off since they’ve put all this time and money into him, so they keep the expectations high, as opposed to the kid who had parents who were just good parents but everyone else says, “well, that kid didn’t get the early intervention, oh, well…”
Unfortuntely, the normal parenting with which you speak of is very much in the minority catagory. However, even among “normal parenting there is much to be learned about behaviours as well as the child working in a group environment that is very different from the home.
Remember Helen Kellor (I know, I know Helen was not retarded or autistic) was removed from the family home by Ann Sullivan due to less than favorable influences of the family on Helens development.
I am not arguing with your paragraph shown above, however I do beleive that intervention in the form of good educational environment even among “Good” parenting environments should not be dismissed as less than significant.
That being said the long term outlook for many autistic cases is certainly not good, even with exceptional educational and parental influences. For many thier condition is pervasive and significant.
My point is that lets now rule out the objective observer perspective of the schools psychologist, Special Ed teacher, and other professionals who have seen many autistic cases verses the singular parental perspective.
After all, it is a fact at Anne Sullivan and the techniques she used with great success with Helen Kellor were viewed as mean and abusive by many especially the parents.
There is still much work to be done in the educational area that has potential to mitigate (not eliminate) many of the life limiting symptoms of autism.
“many of the life limiting symptoms of autism.”
Please could you explain this.
Yes, many autistic kids will move up in the spectrum with time, however early intervention speeds up this process. I agree with Ms. Clark that our kids are genious in many ways (mine is hyperlexic too), but the lack of motivation to pay attention to things that are not their immediate interest can hinder their development. Early intervention gives the autistic kids that extra push they need to focus on tasks that are not a preferred activity, so they catch up with their peers.
I do A LOT to foster my child’s learning and expand his horizons during our playtime. I don’t rely on therapists alone, I do my parenting job. However, there’s SO MUCH to work on besides language itself – social skills, adaptive skills, safety, compliance, motor skills – I couldn’t do it alone. Just like my son’s peers are going to school, soccer or dance lessons, I’m providing him with the best opportunities for learning, which, in his case, includes early intervention designed specifically for autistics and for his own individual strengths and weaknesses.
“Early intervention gives the autistic kids that extra push they need to focus on tasks that are not a preferred activity, so they catch up with their peers.”
But you know there is a lot more to it than not being motivated and often not being motivated has nothing to do with it. Things like difficulties concentrating because of external factors (eg too much stimulation or overwhelming noise or smells for example) can play a huge part. If the child is familiar with something then they can use that familiarity to continue learning about it, if it’s something new then it can be harder to take in. On a simple level I wonder if that’s why I love reading Agatha Christie murder mysteries even though I know full well who’s done it :). Often a child might find processing information difficult, or they may have difficulties with co-ordination, their perceptual differences and cognitive differences will mean they view things differently and sometimes, as with any child, they may just be tired or unsure of things.
I do agree with early help, but I also believe that a child continues to learn and develop after the age of, say, five.
“Life limiting symptoms of autism”
Let me rephrase;
developmentally limiting factors of autism.
Life limiting was probably not an accurate representation of what I was trying to say.
heck that is one of my developmentally limiting conditions
Bullet, of course they do develop and learn throughout their whole life. But there’s a big difference between your child being able to learn 1st grade skills at 6-8 years old, and that not happening until much later on, when all his peers are already working on much more complex subjects and conversations.
If you keep a neurotypical child illiterate and out of school past 10 years old, she still might be able to learn everything later, but there will be a huge challenge for her to catch up with same age peers and to understand what’s going on in the world.
My point is, early intervention is NOT oversold. It is still critical. Instead of dismissing it, we should be advocating for more access to early interventions in the areas where it’s still not available to everyone who needs it. Now, of course we have to be careful and learn how to discriminate between the different types of therapy in order to decide what is the best for your child’s wellbeing and development.