Guest post: "We need to stop looking for a 'cause' for autism"
Autism diagnoses have soared since the early 90s, but Steve Silberman says what we're actually seeing is an epidemic of recognition
Author of NeuroTribes
Posted on: Thu 29-Oct-15 15:11:52
(256 comments )
When I tell parents that I've been writing about autism for 15 years, it doesn't take long to get to the questions. They lean in close and ask, "It's the vaccines, isn't it?" Or, "It's the pesticides, am I right?" Or, "I heard it's the GM foods?" It, that is, being the mysterious X factor responsible for the dramatic rise in autism diagnoses since the early 1990s.
Fundraising organisations in America routinely refer to this increase as an autism 'tsunami', or even an 'epidemic', as if your child could catch it in the playground. Meanwhile, health officials - wary of making blanket statements about hot-button issues before all the facts are in - cautiously attribute the rise to factors such as broadened diagnostic criteria and greater public awareness. But these bureaucratic phrases are cold comfort to a young mum wondering why her three-year-old insists on lining up his toys in strict queues.
As I peeled back layers of medical history to write NeuroTribes, I found a number of issues at play behind the increase in diagnoses. Among them was the story of a very determined young mother named Lorna Wing, who was a psychiatrist at University College London.
When Lorna's daughter, Susie, was diagnosed in the 1960s, autism was considered to be a very rare condition. There was no concept of a broad autism spectrum that includes both chatty Doctor Who fans and intellectually disabled adults who require assistance in daily living. Instead, autism was widely considered to be a rare form of infantile psychosis caused by 'refrigerator mothers' who were unable to offer their children adequate love and affection.
This tragically misguided theory had a catastrophic effect on families as children were sent away to custodial care facilities that were little more than warehouses for the 'severely subnormal', while many parents like Lorna and her husband John bore unspeakable burdens of guilt, shame, and grief.
The problem with seeing people on the spectrum as a historical anomaly - as tragic victims of the toxic modern world - is that society will squander scarce and precious resources on hunting for causes and conspiracies.
When I interviewed Lorna, she told me that she thought the theory that autism was caused by neglectful parenting was "bloody stupid" from the start. She and John were both warm and affectionate people who doted on their daughter, but Susie didn't respond in the ways that a typically developing child would. She never directed her mother's gaze toward an object of mutual interest by pointing, for example. And when Susie had an imaginary tea party, she always sipped her imaginary tea alone.
Lorna wanted to spare other families the anguish of raising an autistic child in a world that offered few forms of support and resources for special education. In the 1970s, Lorna and her assistant Judy Gould undertook an ambitious survey for the Medical Research Council to locate all the children with cognitive disabilities whose families needed assistance in Camberwell, south London. The two researchers found many more children who exhibited the characteristic traits of autism than the prevailing theories would have predicted. They also found that the range of clinical presentations was much broader and more colourful than most clinicians believed. In other words, Judy told me, "these children didn't fit into nice, neat boxes."
Lorna and Judy lobbied their peers to replace the narrow conception of autism - which made it impossible for many of these children to get the help that a diagnosis would make available - with a much broader and more inclusive model that they named the autism spectrum. They also introduced a new diagnostic category, Asperger's syndrome, to make services available to highly verbal teenagers and adults. And the surge of new diagnoses began - just as Lorna and Judy predicted it would.
To them, this was good news; it meant help was more readily available to those who needed it. Unfortunately, people who were ignorant of their work were quick to attribute the rising numbers to the MMR vaccine, pesticides, mercury, wi-fi, and any number of other factors in the modern world.
Lorna knew, however, that people like her daughter have always been part of the human community - hidden behind other psychiatric labels, confined behind the walls of institutions, or struggling to get by with no diagnosis at all. This is not just a theory: in recent years, two major studies (one in the United Kingdom and one in Sweden) confirmed that the prevalence of autism hasn't gone up in recent years. The 'tsunami' of autism diagnoses is actually an epidemic of recognition. We now know that there are a large number of autistic people in our communities - needing help, education, housing, psychological services, reasonable accommodations in the workplace, and ways of making meaningful contributions with the special gifts of their atypical minds.
The problem with seeing people on the spectrum as a historical anomaly - as tragic victims of the toxic modern world - is that society will squander scarce and precious resources on hunting for causes and conspiracies, when what we should be doing is building more support systems for autistic people and their families. The fact that families in the UK still often have to wait years for a diagnosis indicates that the work of changing the world that Lorna and Judy embarked upon in Camberwell 40 years ago has barely begun.
Steve Silberman is the author of NeuroTribes: How to Think Smarter About People Who Think Differently.
By Steve Silberman
Autism is not one thing though. I think there may be different causes. I am sure genetics plays a primary role, however. I have a 13 year old dd with severe autism and I'm sure her father and I are both on the autistic spectrum but neither of us are autistic in the way that she is. There is a lot of ASD in my family but my daughter has a very severe language deficit.
Neurotribes is a fucking brilliant book. Read it. That is all.
Interesting post, thanks. I'll have a look into the Neurotribes book.
bodenbiscuit I'm not sure those differences in presentation necessarily reflect a difference in cause (although it could do).
I think about it as different people can have very different reactions to the same experience, and even for one individual their reactions to the same experience will differ over time. So I used to enjoy rollercoasters and would now pay not to go on them.
Well that is true. I must admit that I always thought Aspergers was a completely different condition from classic autism with different causes. But as I say my daughter has classic autism and her father and I have AS type traits. I am told that autism is linked to other conditions like dyspraxia and I have another child with dyspraxia so all these things make me believer that surely genetics plays at least part of a role. There are some instances where a child would seem to regress quite dramatically.
I'm not sure I agree that Asperger's and classic autism have that clear distinction (and I thought that was why they changed the DSM recently?).
But like you I am sure that genetics play a role. Both DH and I feel we have ASD-traits, but we never had the same extreme problems that DS has, and no diagnosis. We would all have been Asperger's type, if we were anything.
I had epilepsy as a child, so there is definitely something neurological there for me.
DS didn't regress that I noticed - he just seemed to reach a point where he could no longer keep up with what was expected of him in life, and totally unravelled.
I think I caught a programme about this on R4 the other day. As a mother of an aspie I can see how, years ago, my daughter would have just been seen as a bit odd and shy. It's bloody marvellous to know why she is her wonderful quirky self and having that label helps us, and most importantly her, to embrace and celebrate her way of thinking and feeling. Of course it's not always a party, but when thins are tough and she's having a stubborn day, the diagnosis helps by confirming what we already knew, she needs a different type of parenting than an NT, and it's not because I'm not strict or warm enough etc.
I strongly believe it's ALL about genetics.
My AS DS's father is undiagnosed Asperger's as was his grandfather (by all accounts).
Will definitely have a look at that book. The last AS related book I bought for my son was Asperger's Meets Girl, which he informs me is "quite good"
As someone on the spectrum, I'd really like to identify the root causes so I can ensure I don't inflict the misery on anyone else.
As someone on the spectrum, I'd really like to identify the root causes so I can ensure I don't inflict the misery on anyone else.
I think that they will find genes that 'cause' ASD, but don't think this will necessarily mean it is a familial trait. in the same way the some genetic conditions are 'de novo' (ie with no family history) I think that will be the same with ASD. I think this will also explain why it can so often be co - morbid with other conditions, and why it is possible to have a genetic condition with autistic traits, but not 'classic' autism.
I'm reading this book at the moment, it's brilliant.
I have seen it criticised for not showing the realities of day to day life with ASD, but I disagree, I think this book shows the potentials for us and our children when we accept the differences rather than trying to cure or hide them.
An important thing is better and quicker diagnosing, less blaming of parents when we seek help, timely offering of ASD and even PDA strategies instead of sending desperate parents down the parenting course route that so often make things even more difficult, and can be seen as proof that it is us, as parents, that are at fault.
The section on Andrew Wakefield was excellent. I've gone through years of not quite understanding what went on, and being confused due to the conflicting "evidence" that is found in so many websites.
Ds's ASD is almost certainly genetic, through the diagnosis process for him I recognised so many traits in myself, a fair few in dh, and in plenty of family members. If more experts recognised family links rather than pushing how unlikely it is that other family members have ASD when it's so rare , perhaps things would move quicker.
I agree we need to stop looking for a single, environmental cause. but is it still interesting to understand what makes people with autism different in terms of genetics / brain etc.
the headline seems a bit misleading compared to the rest of the post
I really struggle with 'cause theory' and agree it diverts time, energy and money away from the real issues of supporting people with autism and their families. I also can't shake off the thought that if a cause is found, a 'cure' will be found and I'm not able to comprehend what that debate would look like. Would I 'cure' my DS? It would be like giving him a personality transplant. But then I'd do anything to make his life easier and autism definitely doesn't do that.
I'm more concerned that if a cause is found, a pre-natal cull will occur, as is the case with Down's Syndrome.
IsItMeOr - the main disctinction between Autism and Aspergers is language development. Under DSM-V (which we don't use all that much in the UK) it's all autism, but a separate diagnosis of the appropriate level of language disorder or deficit is given.
You know it's only just dawned on me how professionals blame it on the mother being too strict / not strict enough.
I'm sure it's genetic anyway. It's on my side of the family and I suspect there's some on XP's side. DD seems to have a double whammy of the genes (but she's not got Asd it's me not being strict enough apparently ).
Thanks ouryve I know DSM is the US one - it was just what seemed to be used by the UK consultant who diagnosed DS, and then said that he would have been considered high-functioning for the language aspect.
I got the impression that quite a lot of UK consultants are already applying the DSM approach in their diagnoses, but perhaps that was just the one DS saw??
Can that change as the child gets older? I know people who have a dx of autism spectrum disorder with fluent language for example.
Ds4s just says autism spectrum disorder but he is only 2.8 so I guess it might be to early to know how has language might develope or IQ really
I completely disagree.
I have a son who regressed as a very young toddler. He is 16 now and about a year ago had a second regression. He's non-verbal & is in a state now that he is pretty much unable to access anything. He can't talk, he can't surf (something he used to love), he can't sit in the front seat of the car (something he used to love), he can't go to the supermarket (again something he used to enjoy), he can't even be in the same room as his brothers now. Autism at the moment has him so trapped & is quite simply eating up his life to nothing. And the worst thing? He's completely aware of that.
We have our own ideas why he regressed from looking very closely at our family history (no autism or AS it even BAP in our massive extended families) and I am studying that very hard again to try & help him get out of this second regression. We also used our best guesses to inform how we treated ds2 & ds3 - especially when ill. Ds3 in particular has an immune system that seem to react in a similar way to ds1 - but (with different approaches) he can talk, is independent & quirky NT. He will have a life of his choosing. Very different from ds1.
I hope to God that if ds2 & ds3 have children by the time they do so they have a better idea of what happened to ds1, so their own decisions can be informed.
And I thank god I did think about why ds3 regressed & changed things for ds3 otherwise I think we could have had history repeating itself.
There's bugger all research into causes in the UK anyway (& pretty much no research at all on people like my son - UK research is 99% on high functioning autism/AS) biomedical research is very US based.
And the funding for that research doesn't affect the funding for day to day support. That comes from local councils & has been slashed by austerity.
And autism is not one thing. Most researchers agree it's autisms now.
I think neurodiversity is fine for those who choose it & can talk about it. It's valid, I fully support anyone witt that perspective if they are talking about their view.
But they don't speak for people like my son. They really don't. Those that do (such as Lucy Blackman, naoki Higashida etc) describe autism as an incredibly frustrating (at best) existence.
We've just found out the cause of my son's severe autism .... It's a gene mutation and the 30 kids in the world with this mutation all have autism!
How does it feel babba? To know?
I've had a bit of a 'I wonder' moment this week with some facebook posts. I'm going to email his paediatrician & psychiatrist over the weekend with my thoughts. It would explain why NT ds3 has some issues as well.
YY ouryve that's what I think too, I typed it out twice and deleted it because it feels such an 'out there' thing to say, but I believe that if a cause/test is found then termination of pg will be the cure