This post is not restricted to home educating parents, but is about something which a number of people have noticed. Until a few decades ago, disorders such as schizophrenia and autism were thought of as being produced by strange parents. Leo Kanner, the man who first defined autism in the 1940s, came up with the idea of the so-called ‘Refrigerator Mother’, whose emotional coldness produce autism in her child. The fathers too were supposed to be remote and not join in their children’s lives properly. These ideas are now discredited and we know that both schizophrenia and autism have a genetic component and are essentially neurological problems, rather than a result of bad parenting.
And yet, it has been observed again and again that the parents, particularly the mothers, of autistic children are often a bit odd. They typically present as a little abrupt and not empathetic; slightly disconnected, in fact. Now all this goes very much against the prevailing paradigm and so tends to be ignored. When the subject does come up for discussion, it is assumed that because autism can be passed down through families genetically, perhaps these parents are themselves on the autistic spectrum. There is another possibility and it is an idea about which I would like to hear readers’ opinions. The main emotion towards them encountered by the parents of a child in a wheelchair will be compassion and pity. Irritating, yes, but quite understandable; people feel sorry for a mother whose kid is crippled. The main emotion which many mothers of children on the autistic spectrum come across in others can be hostility and disapproval. This is because their children look normal but apparently behave badly. They are often seen as lax and careless parents, unwilling to tackle their child’s supposed naughtiness. This difference in experience must have some effect upon the parents.
The idea which some of those with whom I have worked came up was that this experience of constantly feeling embarrassed about your child might after a few years result in mothers become a little harder and disregarding what others felt and said. In other words, any perceived oddness in such mothers would be a long term reaction to how they are treated by others, particularly other parents who do not understand autism. I have certainly seen one case of a mother who, I knew both before and after having an autistic child, but since this sample could hardly be smaller, (N=1!), I do not feel able to advance it as evidence. Do readers have any thoughts on this? Have others found the parents of children on the autistic spectrum as being a little strange? If so, can anybody come up with an explanation?
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Subtitle:
ReplyDelete'Oy! Autistic Kids' Mums? How weird are you?'
'Subtitle:
ReplyDelete'Oy! Autistic Kids' Mums? How weird are you?'
I feel tempted to say, 'You idiot!', but shall restrain myself. The subtitle is actually;
'Shit, how rough it is to raise a child with a disability and then get slagged off for being a useless parent into the bargain; no wonder I have had to grow a hard shell to cope with this'
I can restrain myself no longer; you are an idiot.
Simon.
A few points.
ReplyDeleteAlthough Kanner did consider the emotional coldness of parents as being a factor, he was explicit about the possibility of autism having biological origins - he cites the fact that symptoms were present from birth to support this thesis. It was Bettelheim who really fostered the refrigerator mother idea.
Secondly, although one can make a distinction between genetic and environmental models of autism, they are not mutually exclusive. The kind of model that most accurately reflects reality is one that takes into account genetic, epigenetic, environmental and developmental factors. In short, genetic expression is interacting with environmental factors all the time. Autism, or people’s behaviour in general, is an emergent property of many factors.
Thirdly, I do take issue with your use of the terms ‘odd’ and ‘strange’. They are not explicit enough. They imply that there is something called ‘normal’ from which the parents in question are deviating. Once you try to define ‘normal’ things get complicated.
Fourth, why single out embarrassment as being the predominant factor in the parents’ perceived ‘odd’ behaviour? Parents of autistic children do indeed feel embarrassed by their children from time to time. They also feel exhausted, perplexed, worried, anxious, frustrated, depressed and angry. Most people, faced with the responsibility - in the absence of any effective support - of a child who exhibits extremely challenging behaviour, would be unlikely to come across as resembling the typical man or woman in the street - even if you were able to define such typicality.
'Fourth, why single out embarrassment as being the predominant factor in the parents’ perceived ‘odd’ behaviour? Parents of autistic children do indeed feel embarrassed by their children from time to time. They also feel exhausted, perplexed, worried, anxious, frustrated, depressed and angry.'
ReplyDeleteAll this is true and I took it as given. I was exploring one aspect of the matter; the different attitude which people have to a 'normal' looking autistic kid, as opposed to the way that they view a child with a clearly visible disability. I was wondering what difference this might make. The mothers of children with other, more noticable disabilities might eperience all the other emotions which you list; the aspect at which I looked is unique to those whose children look like everyboy else's.
Simon.
It's ok. I'm used to being called names on this blog: bonkers, bigot, idiot. I'm also the mother of an adult with autism so therefore, I'm weird too.
ReplyDeleteNo, I haven't deveoped a hard enough shell (apparently). I still manage to burst into tears on a regular basis when people make ignorant assumptions about autism. Oh well. Possibly not weird enough, then.
The main effect on my mental health of having raised a child with autism though, is probably anxiety. I see a vulnerable young woman with a very hard road ahead of her through life and very little support available for her.
The latest research from Simon Baron-Cohen is that there seems to be a problem with siblings of kids with autism, in the area of recognising human emotions. I'm not enough of a scientist to be able to interpret the data though.
When my son heard the research results being described on the radio, he laughed. He doesn't feel he has a problem with that. It's possible that just growing up with a subling with ASD does affect their emotional development, with or without a 'gene'.
And just so you know, posts like this, phrased so callously, add to the burden that mothers with kids autism carry.
The bigotted bonkers idiot.
Thanks to suzyg for clearing up the origins of 'refrigerator mother'. I agree with everything she says about that and the genetics.
ReplyDeleteI think that Simon is correct in observing that there is a change in the parent after having to deal with an ASD child, especially in public. And Suzyg is correct in adding all the rest of the factors too. How many of us have never snapped at someone because we are overtired. So it isn't straight forward and not all parents of ASD children react in the same way or have all the same characteristics.
The genetic side of things is definitely part of the picture. I remember when I first started posting on lists one wise moderator pointed out that if the child has anything from under the neurodevelopmental umbrella (that includes dyslexia and things other than ASD) then the chances are that one of the parents will too and that has to be borne in mind when supporting them.
There is also something else that Tony Attwood has said at his workshops. When an AS man marries an NT (neurotypical) woman, he becomes less AS, but when a NT woman marries an AS man and gives birth to one or more AS children, she starts to become AS herself!
He says it in a very amusing way, but I can see that happening in my own family. As an NT women I have more empathy than my dh and ds, and so I end up thinking like them which in turn affects my behaviour. The difference is that I can still step outside my home life and enjoy a party, whereas my son can't leave his AS behind.
senmum1
Also,
ReplyDelete'And yet, it has been observed again and again that the parents, particularly the mothers, of autistic children are often a bit odd. They typically present as a little abrupt and not empathetic; slightly disconnected, in fact.'
Could you please point to this research. Who has 'observed again and again' that we're often 'a bit odd'. This is a new one on me.
"They typically present as a little abrupt and not empathetic; slightly disconnected, in fact.'
ReplyDeleteCould you please point to this research. Who has 'observed again and again' that we're often 'a bit odd'. This is a new one on me."
Would you consider dysphoria as being a 'bit odd'?
http://psycnet.apa.org/psycinfo/1994-09657-001
There is also a link between previously (pre children that is) mental health disorders in parents and ASD children:
http://aje.oxfordjournals.org/content/161/10/916.short
"Results suggest that prenatal environmental factors and parental psychopathology are associated with the risk of autism."
Tony Attwood often refers to the fact that mental health problems are seen in the parents of children with ASD, and stresses that these are diagnosed before they had the children, so it would be in addition to the extra stress and depression that these parents under go because of caring for a child on the spectrum.
senmun1
Yes, I have grown tougher as I have fought to get my children what they need, and, all too often, lost. Yes, I do not tolerate prejudice or incompetence in the way that I used to. Yes, I no longer trust authority or believe that 'experts' know half what they claim to. Yes, I certainly disregard what others say when they are talking uninformed rubbish.
ReplyDeleteAnd that is all I need to say about this post...
and then we wonder why social services misinterpret ASD parents of ASD children as abusive or "trouble"......because they are surrounded by ignorant idiocy like this.
ReplyDeleteLots of unqualified opinion again rubbing salt into raw wounds in the name of sensationalism. You make so much up that you should have been a Sunday Sport writer Simon!
Many ASD experts will tell you that there are many many undiagnosed ASD parents out there and that if a child is on the spectrum then there is a 70%+ chance of at least one parent being on the spectrum.
ASD families have a hard enough time Simon without you adding to it. Try to develop a little bit of a conscience and some humanity will you?
Understanding Sympathetic Father who has seen his neighbour's child almost taken away by SS because of rubbish like the above...
'posts like this, phrased so callously, add to the burden that mothers with kids autism carry.'
ReplyDeleteNot sure about this. Had I mentioned that the parents of children with autism are far more likely to have mental health problems and suggested that they acted oddly because they were unbalanced; that would have been callous. Looking at the effect of having a child with a hidden disability and thinking about how this might change a person's character, does not strike me as being at all callous.
'because they are surrounded by ignorant idiocy like this.'
Again, I am not sure that I would go along with this. I first noticed the difference between parents of children on the autistic spectrum and those of other children with more visible syndromes back in the seventies when I was living in Israel. I worked for some time at the Alyn Hospital for Crippled Children in Jerusalem. This was a residential place for children and young people in wheelchairs. I then worked at Kfar ha Sveddi, a village type place for children and young people with severe learning difficulties, many of whom were also autistic. The parents of children on the spectrum tended to be different both from those whose kids were in wheelchairs and also from those who simply had learning difficulties without autistic features.
In the 1980s, I worked for Alice Hoffman Homes and had a lot of dealings with the parents. Later, I was involved in other projects with families containing children with difficulties which were not autism. Again, the difference was pretty noticeable. And of course for the last twenty years or so, I have worked supporting families with children with all sorts of problems.
I can see that this is contentious and that some readers would rather that this subject was not explored. This will not change the situation at all; brushing things under the carpet and pretending that they do not exist, seldom does any good. However, I shall keep off this topic in future.
Simon.
Sad that...
ReplyDeleteit was quite interesting exploring the grey area between parental empathy and their Autistic children.
What grey area? No such thing has been proven.
ReplyDeleteYou should learn to read before you bite.
ReplyDelete'Looking at the effect of having a child with a hidden disability and thinking about how this might change a person's character, does not strike me as being at all callous.'
ReplyDeleteI don't think this is what your post was doing. I think it was hiding behind that idea.
'I can see that this is contentious and that some readers would rather that this subject was not explored.'
ReplyDeleteAs with many things, it's the way it is done that is crucial.
You know that many of the people who comment here are the mothers of children on the autistic spectrum. This seemed like a nasty pot shot at them.
Your blog is interesting when you discuss education, but less so when you attack home educating parents or slyly insinuate they are not quite the full ticket.
'slyly insinuate they are not quite the full ticket.'
ReplyDeleteI don't think that saying that some people tend to be a little abrupt and lacking in empathy is suggesting that they are 'not the full ticket'. I am myself pretty abrupt and not over-burdened in the empathy department. This does not mean that I am not the full ticket!
Simon.
"I am myself pretty abrupt and not over-burdened in the empathy department."
ReplyDeleteToo right. I feel sorry for the people you 'help' as part of your charity work if your posts and comments here are anything to go by. Hopefully you are different in real life.
Well, a useful comparison might be the effect on parents with children dx'd with ADHD. They also look 'normal' but exhibit challenging behaviour that earns their parents the same kind of social disapproval and blame, for failing to discipline their child, and presumably should similarly prompt the growing of a 'thick skin' to deal with the ignorant and very negative responses they experience. I've never heard it suggested though that these parents are perceived as 'odd' in some way.
ReplyDeleteI have a 25 yr old son who is HFA / Aspies/ DAMP (take your pick; other than consensus that he is 'clearly on the autistic spectrum', assessments have come back with different conclusions as to where exactly). I might well come over as one of these 'odd' mothers you refer to, and my best explanation for that is that I too would seem to exhibit a number of mildly autistic features in my make-up.
Despite doing loads of research on ASD while we were trying to get my son assessed as a child, this possibility never crossed my mind. It was only when a paediatrician took very searching and exhaustive histories of myself and my partner that the answers I was giving started to unmistakably sound bells for the doctor and myself. Like my son, as a child I was a bit of a 'Billy no mates'. I found fitting in a bit of a puzzle. Throughout childhood and adolescence I had mad enthusiasms I would pursue avidly for weeks or months (insect digestive systems; Tudor ship design; Roman military strategy; the authenticity of the Casket Letters....). And still do (WWII Kriegsmarine history at the moment). Where everyone pasted magazine cut outs of pop stars in the front of their hymn books, I had an idealised and heroic portrait of the young Napoleon. I shared my son's dyspraxia, difficulties walking without falling over my own feet, and inability to control a pen well enough to write remotely legibly or keep up with note taking. I could bang on.
I have met many 'odd' parents since home educating my kids. The odd parents tend to have odd children. I suspect in many cases that both parents and children are autistic and had they attended school may have been pushed through autistic assessments. I accept that parents of autistic kids are endlessly judged for bad parenting and this may have an effect on their empathy and patients. However, in most cases I believe that the parents themselves are on the spectrum. I often feel inspired by these 'odd' children and their parents as that have many attributes that neurotypical children and their parents do not have. Actually, when reading this website I see autism attributes. You show courage, strength and obsession to express your view regardless of how other may receive that view.
ReplyDelete