originally published October 4, 2013
Part 1: Losing Your Diagnosis?
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: Development and Course: Part 1
Part 8: (you are here)
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4
I’ve been very tired the last couple of days and generally having a hard time, so I apologize for taking so long to get to this post. Don’t worry, I’m still very into this series and very excited to be writing about this topic.
Paragraph 2 in the Development and Course section of the commentary in the autism spectrum disorder entry of the DSM-5:
The behavioral features of autism spectrum disorder first become evident in early childhood, with some cases presenting a lack of interest in social interaction in the first year of life. Some children with autism spectrum disorder experience developmental plateaus or regression, with a gradual or relatively rapid deterioration in social behaviors or use of language, often during the first 2 years of life. Such losses are rare in other disorders and may be a useful “red flag” for autism spectrum disorder. Much more unusual and warranting more extensive medical investigation are losses of skill beyond social communication (e.g., loss of self-care, toileting, motor skills) or those occurring after the second birthday (see also Rett syndrome in the section “Differential Diagnosis” for this disorder).
I think this paragraph is especially interesting because there has been a lot of debate in the autism community about whether regression actually occurs or whether something else is going on, for example, a developmental delay causing slower progress that only starts getting noticed when a significant number of milestones are missed.
I also think some people have a lot invested in the “regression vs. slower development” argument because of how it feeds into the vaccine argument. Regression is often seen as evidence to support the vaccines-cause-autism theory because the typical age of regression and the age of lots of vaccines and boosters tend to coincide, making lots of parents feel that their child was just fine until s/he got the vaccines.
But with the DSM-5 declaring that regression is a genuine thing that actually occurs, it weakens the vaccine argument because so many of those children who appeared to be having an abnormal regression when they got their shots turn out to have been having a normal (for autism) regression that just happened to be at the same time as the shots.
For a long time, I was undecided as to where I stood on the issue of autistic regression as far as whether it was something that actually occurred or something that appeared to occur because a child was developing slowly and it took a number of months before the divergence of the Autistic child’s development was noticeable in comparison to the non-autistic children’s development trajectory. (I never accepted the vaccine theory, even before Wakefield was discovered to have lied about his data and lost his license to practice medicine as a result of it.)
What convinced me that regression is a real thing was getting to know two different Autistic people who have fallen into the category described in the last sentence of this paragraph: regression after age two. Both people I know had significant autistic regression in their teen years (and both were repeatedly accused of being frauds because regression after age two is so rare. So I am glad to see the DSM-5 acknowledging that late regression can, indeed, occur and hope this helps my friends when they are criticized for not being able to do as adults many of the things they could do as pre-teens.)
There is scientific evidence of late autistic regression before the DSM-5 and it is probably some of that research that informed the committee that made the decisions for the ASD entry and commentary in the DSM-5. The big one I always come back to is a 2000 article by Lorna Wing and Amitta Shah in The British Journal of Psychiatry. The article is titled “Catatonia in autistic spectrum disorders” and it discusses a phenomenon the authors observed — a small percentage of Autistics develop increased catatonic behavior and apparent loss of skills around age 10 to 19. Some of those who fit this profile were previously diagnosed with Asperger’s Syndrome, indicating that the change in observed behavior can be quite large in these cases.
The two people I know who fit this profile (and fit it uncannily well, I should add) do not like the word “regression” to describe their observable changes. I agree with their reasons for displeasure with the term, but will continue to use it for this blog entry because it is the word used in the DSM-5 and I don’t want to cause confusion by changing terms. But do be aware that many Autistics find it painful to be described in those terms.
And never assume that an Autistic doesn’t hear what you say around them. There have been cases of Autistics who were uncommunicative until they were in their 30s and were accidentally left near a typewriter, at which point they revealed that they could communicate, that they had somehow picked up written language with it never being taught to them, that they had heard and remembered everything that had been said to or about them, and that a lot of the assumptions people were making about them were very damaging.
So assume that everything you say is heard and understood and try to remember that some ways of referring to people hurt. Calling an Autistic’s change in observed behavior “regression” can make a person feel like their growth is not recognized, only their deficits. And it can carry undertones of a message that the individual is not what they should be or what was desired from them. These may seem small nits to pick, but if you are the one who is being misinterpreted and talked about right in front of you all the time, issues like the words and concepts that are being used to describe you are huge.
At any rate, back to the idea of regression in later life. Because I know two people who have experienced this, I was already well-placed to accept what the DSM-5 has to say about the existence of regression. If I know people who “regressed” in their late teens, why shouldn’t I believe that some autistics “regress” at age two or so? The development of an Autistic person is not a linear progression and our severity levels, as mentioned earlier, can be quite fluid. So I fully accept this paragraph of the Development and Course section of the ASD discussion in the DSM-5 and I am pleased to see a mention of later regression. While the discussion doesn’t make it clear that this later regression can occur in one’s teens (or in one’s thirties or forties, I should add. I have seen Autistics lose skills temporarily in the wake of a life tragedy in their middle age years) It does explain that this loss of skills can happen after age two and that’s going to be very beneficial for the many Autistics who don’t precisely fit the standard narrative.
To take this from a theoretical level to a personal level, I have lost skills at different times in my life. Regular readers will already know that I, like many other Autistics I know, sometimes lose the skill of speech (although I am still able to write or use ASL during times when I am unvoiced.) That is my most frequent encounter with shifting skill levels, but I do have times when I stim more and times when I stim less. I have times when I forget how to cook or even forget how to stay on task enough to eat. I frequently forget how to get from point A to point B (a state worsened by my topographical agnosia in which familiar places can look foreign, especially if I am approaching them from a direction I usually don’t.) I have times when my self-regulation of emotion skills drop out. I have times when it is practically impossible for me to understand human speech and other times when I have problems with understanding spoken language but the problems are small. I also, though I do not have and have never experienced catatonia as described in the Wing and Shah article, have days where my sense of balance is completely obliterated and I fall down several times in the course of living a normal day (and other days when my balance is strong enough to do yoga asanas.)
My skills are uneven and they can come and go and I’m not always aware of the triggers. I’d like to see a discussion in the comments of “regression”, both temporary and apparently permanent. Did your kid “regress”? What age and how? (And I’m sorry for any pain you feel from watching your child experience those changes. As much as we don’t like being described as “regressing” I am aware of how stressful and painful it can be for a parent to watch us go through these things and similar things Autistics regularly experience.) Have you “regressed” in your autism? How do you feel about it?
I think this is an important topic and I’m glad to see the DSM-5 team opening the discussion of autistic regression. Thank you for reading and I’m looking forward to any discussions that crop up in the comments for this entry.
So by way of introduction, I’m (an autistic) developmental pediatrician. I am anti pathologizing of autism overall but there are some relevant medical factors.
2 things about regression
1) After yet another encounter with the vaccine theory, I went looking to see if anyone had done a study on autism and regression before the MMR vaccine was a thing. And I found one! I unfortunately don’t have in front of me right now but the gist is, in 1964 some researchers tried to count every child diagnosed with autism between 8 and 10 years of age in a particular county in England. Measles vaccines were first available in England in 1963 so while some of the children might have been vaccinated, they would have been at least 5. About a third of the children are reported as having had some regression, generally between the ages of 17 and 27 months. I don’t know why we don’t promote this study more.
2) I have rarely but definitely cared for patients who experienced a clear regression that I was able to observe over time. So I do believe it does happen sometimes beyond just “development slowed” or “this is when we noticed” or “abilities fluctuate depending on circumstances” which are also definitely things that happen. Often this change seems to occur when children learn a lot of single words and start putting them together. For many children this is about 18 – 24 months. Interestingly, for children who also have Down Syndrome this is usually closer to 4 years. Autistic children who have Down Syndrome who experience regression typically do so between 4-5 years.
Very interesting! I know that I would love to have some more information on that article mentioned in Point 1.
I would, too. I searched the medical journals but couldn’t find anything resembling it.
I’m not sure where the above comment came from because I have to approve all comments to the blog and I don’t recall ever seeing that comment before now. *scratches head*