A Conversation with Dr. Catherine Lord

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What are the early signs of Autism?
Dr. Lord:  One early sign that doesn’t occur in all children, but is probably the clearest early sign, is when a child seems to lose interest in social interaction - like a child who was very responsive and would smile when he looked at his parents, and then over the course of a month or so gradually doesn’t smile back when the parents smile at him.  The child may be really happy and may be smiling but not in response to an interaction with his parents.

There are other early signs: If a child develops a few words (usually fewer than 10, but sometimes more), such as bottle or baby or dog, and uses them appropriately but gradually uses them less and less.  Also, if a child doesn’t respond to his name by the time he’s a year or 14 months; if a child is really very quiet; if a child does really odd things with objects in the same way over and over again; if a child doesn’t approach the parents to point and show them things, doesn’t want to get the parents to look at the moon, a fire engine, or share something special, like showing their new shoes or a toy, this is often meaningful.  Those kinds of signs are the most important, but really clear signs tend to not occur in most children with Autism. We have to be very careful because any one of these things doesn’t mean Autism

At what age can Autism be diagnosed?
Dr. Lord: Sometimes there are signs before age two, but I think that Autism can be diagnosed definitively at age two.  We have to be really careful because we know that children who can be diagnosed between age two and two and a half will very likely have an Autism diagnosis throughout their lives.  There are kids who at 12 months or 15 months seem to have signs of Autism, and then by age two or three they don’t, and there are kids who don’t show signs of Autism until later.  It’s clear that kids who have Autism don’t look that different from other kids until they’re between 12 and l8 months which is why a comprehensive diagnosis is best made at two years old.The brain is constantly evolving from infancy through childhood through adolescence.

Can Autism be outgrown?
Dr. Lord: There are some lucky, probably very bright, children who gradually seem to grow out of the disorder; but that number is pretty small and under age two we just don’t know.   It’s clear that some kind of compensation occurs. When you look at the studies about brain activation, it turns out that if you show someone a smiling face most of us will have a certain area of our brain that activates, and people with Autism have all sorts of other areas that activate.  So it’s not that they all have this other area, it’s that their brain has worked out different ways of responding to that stimulus.

Are there specific criteria that will determine if a very young child has Autism?
Dr. Lord:  We’ve developed a diagnostic instrument for really young kids (ADOS, the Autism Diagnostic Observation Schedule).  This instrument consists of a series of ways for an evaluator to play with a child to observe his or her social behavior and communication.  We present ten different tasks over a period of about 45 minutes with the parents present, so you can involve them. What we do is to create certain situations and challenges where almost every child will look at a person – so, for example, if a child is playing and using some object and you put your hand smack in the way of what they’re doing so they can’t do it any more, most kids will wonder what’s happening and will look at you or their parents. Children with Autism won’t.  We  present those kinds of small challenges, such as just ignoring the child.  Most children are not happy being ignored for very long and will come to you and try to get you involved in what they’re doing, but a child with Autism may not even notice. We can get good agreement between the scores and the clinician’s impressions of what the child is like now, and although the stability of those scores is far better than chance and better than the clinician’s impression, they still change a whole lot more than they would if you give the same instrument a year later.

Are early interventions the most effective?
Dr. Lord:  We really hope so.  We don’t really have proof that that’s the case. There are a few studies that suggest that kids who start interventions at three or four do better than those who start interventions at five or six.  The big hope is that we can have social interventions with really small kids, so then we can keep them in a more normal social environment.

Are more interventions for young children being developed?
Dr. Lord:  New intervention techniques are starting to be developed.  However, really young kids are usually identified as having language problems; they don’t often get identified as having ASD.  People want to believe the language diagnosis very much, which is understandable.  So we haven’t seen many very little children, and most of the little ones we see have been identified by their own parents, who’ve been concerned about their child’s unusual behavior and have gone to their pediatrician.  Hopefully, the pediatrician then refers them to clinicians with this training.

What about adolescents or young adults whose difficulties may not have been identified at an earlier age?
Dr. Lord:   It would be very rare if adolescents and young adults with ASD didn’t have problems earlier in life, but their problems may have been diagnosed as ADHD, or anxiety disorder, or a non-verbal learning disability, or oppositional behavior.  It’s not that they don’t have these problems, but they have ASD as well, or the other problems may be a consequence of ASD.  The main signs for adolescents and young adults with ASD are usually social deficits, not understanding how people interact, often not ever having had a friend, not understanding what relationships are about. Adolescents and young adults really want social contacts; it’s not that they’re aloof and don’t care. They just don’t quite get it; they don’t quite understand the back and forth of interactions.  The other hard reality for an adolescent is that their parents can’t be their life.  With a two-year-old, parents can do amazing things and can make their child happy – but, with an adolescent parents can take them to a movie, but can’t make them happy.  By far the best organized services now are for preschool kids – this is a time when parents are in charge;  for example, parents can get their kids to preschool and can be home at certain times so early intervention specialists can come to their homes to work with the child and the parents or caregivers.   Parents, however, can’t be involved in that way with eighteen-year-olds. So we have to rethink services for adolescents.

Since the identified number of cases of Autism has been increasing, do you think we’re seeing an epidemic?
Dr. Lord:  I don’t think we’re seeing an epidemic.  I think we’re getting better and better at diagnosing and the diagnostic criteria are broader.

Which treatments have been proven effective?
Dr. Lord:  At this point the effective treatments are behavioral in the sense that we’re teaching children how to behave.  There’s a lot of evidence that treatments based on operant learning – if you do this then this happens; when I hold this up, you say this - are effective.  However, we don’t know what’s best for different children – some need very structured teaching and others less structured teaching. The reality is that knowing what this child is really good at is just as important as the diagnosis. One child may be incredible at puzzles and not good at understanding language.  We do know that if you leave it to the child and totally follow the child’s lead, there’s no evidence that you’re going to get anywhere.  Very good therapists and teachers may do incredible things with certain children, but when we actually look at what they do it’s not that different than loose behavioral treatment.  The therapist is  trying to figure out what the child wants to do, set goals within the child’s reach, build on that, make it a positive experience and then incorporate it into social behavior.

Are there treatments that have made grand claims but have turned out not to be effective?
Dr. Lord: There’s one every year – I think the most conspicuous has been secretin, in which a pig hormone is used.  When someone reported that a child who was treated with secretin was cured, then people were buying it, physicians were selling it, but when NIH funded a slew of clinical trials it showed that it did nothing. The biggest pitch right now is hyperbaric oxygen.

Is there a causal relationship between vaccines and Autism?
Dr. Lord:  We could never say for an individual child that immunization didn’t affect the brain.   But the connection that the MMR (measles, mumps, rubella) injection or mercury causes Autism is just completely disproven; there’s not one iota of truth in it.  The logic was that people who have mercury poisoning sort of looked like kids with Autism.  All of the public health data show there’s just no relation to Autism.  I think that the fact that most kids with Autism do lose social skills in the second year of life is a tragic phenomenon, and for parents it’s just irresistible not to make a connection and associate that with other things, like vaccines, that happened during that time.

What are the promising leads in current research?
Dr. Lord:  There’s been a lot of interest in looking at brain functions during social tasks and looking at the brain in a resting state, so that’s one good focus; what will come of it we really don’t know.  Also, I think we’re getting more sophisticated; initially researchers were looking at the activation of different areas of the brain, and now there’s a lot of interest in biological motion -- the idea that if we look at a face, what’s important is not just seeing the configuration but how people move and how people move differently than flies or monkeys. Researchers usually have their own favorite brain region – the midbrain, the cortex, the cerebellum.  I think what’s vital but hard is how you put that information together, something that Dr. Xavier Castellanos at the NYU Child Study Center is interested in doing.  In his work he also gets information from typical kids about different regions of the brain and then can make comparisons.

What’s the focus of current research in genetics?
Dr. Lord:  Genetically there’s almost an overabundance of research right now because of the technology.  Researchers are finding many specific abnormalities, but what we don’t know yet is whether these abnormalities are just linked to Autism or are they linked to risks for many things?  They’re thought to be more common in Autism than in the ordinary population, but it also seems like they’re often more common in ADHD or in Schizophrenia or in other disorders.

Autism at the present time is totally dependent on a behavioral diagnosis. Some geneticists stress the importance of being able to identify Autism biologically. If we can start with Fragile X or Tuberous Sclerosis or 15Q111 Gene Deletion we can then say whoever has this condition has Autism- you can look at the differences and ask questions. Is it that the kids who have Fragile X and Autism are the kids who are more severely intellectually disabled or that the kids who also have these other six genes – there’s a lot of interest in that.  Then we might be able to come up with a medical treatment even if we don’t know exactly what causes the syndrome.

The current administration will make funding for ASD available - where would you like to see it go?
Dr. Lord:  I would like to see it go to developing services for older kids, adolescents and adults.  I think money should go to things that fall between the cracks, like coordination of medical, educational, and community services. I think we need more treatment research, but it’s very expensive and hard to do. We need big studies across multiple sites, we need control groups, and we need people getting different kinds of treatment.  We also need to work across disciplines, for example, teaming up people who know job training work with people who know about Autism.

What do you think are the major accomplishments of the past several years?
Dr. Lord:  I do think that things are better, that kids are identified earlier, that they’re getting more services, and that the world understands more about Autism.  Services are more available and eventually lead to access to regular schools and jobs for some. I think we’re in a much better position to compare results of research, because we at least agree about who has Autism and who doesn’t.  So these aspects have gotten better and have allowed people to communicate much better across disciplines. In terms of the lives of kids, I think that kids who have Autism but do not have intellectual disabilities and who have good mainstream schooling are really in a better position, at least coming out of high school. I think being with ordinary children and seeing how they behave is a radically different life experience than being in a separate school system their whole life, so I think that’s better.

Have your interests and your work focused mainly on the younger kids?
Dr. Lord:  Well, I’ve been interested in the whole range, including adult services.  I think it depends on where I am.  If I’m with a group of parents with children of a specific age I try to figure out what we can do for that age.  So I’ve done a little bit of everything.  I’ve also been following a group of 200 kids since they were 2; they’re now l7 to 20.  I’m interested in what they were like when they were two, but I’m also very interested in what they’re like now, how got there and what paths they took, and what can we learn from them that we can put to use.

I think this is a hopeful time, that encouraging things are happening on multiple fronts – new research paths, new treatments and new prevention strategies are being developed.