Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts
Thursday, 21 November 2013
I think my son must be autistic…
Reading the Ofsted publication, Local Authorities and Home Education, 090267, 2010; something rather curious strikes one. After mentioning that a quarter of the parents who spoke to the inspectors had children with special educational needs, the report continues;
There were also those whose parents, often supported by medical diagnosis, identified the children (many of whom were very able) as having some form of autistic spectrum disorder.
I understand this to mean that among the parents who met the inspectors were those who had themselves diagnosed their own children as being on the autistic spectrum, without any clinical input by a doctor, educational psychologist or anybody else. This is not in the least surprising; claiming that their children are autistic, dyslectic or are suffering from dyspraxia, is something of a theme running through large swathes of the British home education scene. How many readers have either heard at groups or read on blogs and internet lists, statements such as;
I’m sure my son has Aspergers
I told his teacher that I thought she was dyslectic
I think he may be on the spectrum
Now it’s entirely possible that some of these children will go on to be diagnosed with such syndromes, but an awful lot won’t. In fact some of these parents admit that their son or daughter has seen a psychologist who has found no signs of autism or dyslexia. This does not shake their conviction that there is a neurological reason for their child’s inability to learn to read or get on with other kids.
This seems to be a particularly home educating thing. Most of the parents that I have dealings with at schools, commonly resist any suggestion that their children are different; let alone that they have some kind of learning difficulty. Home educating parents, by contrast, often embrace the idea with a strange fervor! I am not at all sure why this should be, but there is no doubt at all that it is something which crops often in home education in this country. Even more curious is the way in which some home educating parents then adopt autism as an identity for themselves. They suddenly realise that the reason that they didn’t have many friends when they were at school was because they were autistic. Obviously, they were geniuses, savants on the spectrum who went unrecognised by their stupid teachers! This really is a home educating thing; in the sense that I have never encountered it in any other parents. This self-identification with people with Kanner’s and Asperger’s syndromes can be taken to weird extremes. The woman running the biggest face book group for home educators, she lives in Doncaster, even signed up to an Aspies’ dating site a couple of years back.
None of this is to suggest that many home educated children are not on the autistic spectrum. I am merely observing that whereas in the schooled population there is often a reluctance to accept such a diagnosis, among home educators it seems almost to be a badge of honour; allowing them to join the club, as it were!
Labels:
ASD,
Asperger's,
autism,
autistic spectrum disorder,
home education,
Kanner's,
UK
Monday, 14 October 2013
The abuse of home educated children
Over the last week or so, I have been pointing out that abuse rates for home educated children are far higher than those for children at school. I have also been discussing one factor which causes this to be so; the high proportion of home educated children with learning difficulties and behavioral problems. Inevitably, this has caused offence to some, but since I find the abuse of children with special educational needs offensive, I don’t think I need worry unduly about any offence I might have caused by drawing attention to the scale of the problem.
One of those commenting here trotted out a few of the hoary old myths associated with home education and I propose today to tackle these and lay the ground for looking tomorrow at some actual figures about the abuse of home educated children. First though, let’s look at what was suggested yesterday. The first concerns the abuse of children with special educational needs, which is relevant for reasons at which I have already looked:
I would suggest that before the professionals turn their attention to a group where there is no evidence of abuse, they look at residential school settings where, sadly, there is such evidence, including one school where OFSTED gave it a glowing report, then rapidly downgraded it to 'unsatisfactory' when it realised that the safeguarding was so brilliant that a girl was excluded for being raped because it was against school policy to have sex.
those of us who are home educating because we removed our children from school situations that constituted neglect, physical abuse and emotional abuse need to hear.
This was by a mother who has children with special needs and is hinting that the abuse and neglect of such children is primarily a problem in schools and residential units. This ties in neatly with the mythology adopted by many home educators, that schools are dangerous and unsafe places for their children; rife with abuse and neglect. This is utterly untrue. I am using research mainly from America here, simply because that undertaken in this country has been patchy and small-scale. Looking at the question of abuse and neglect in general, who are the perpetrators? One study, (NCANDS, 2005) found that the figures were as follows;
79.4% parents
6.8% other relatives
3.8% unmarried partners of a parent
The rest were nearly all friends and neighbours of the family. Abuse and neglect in schools and residential settings was completely insignificant. How insignificant? Another study looked at this, (USDHHS, 2007), and found that less than 1% of cases of abuse were by residential staff, teachers or other professionals. Yes, that’s right; less than 1%. What research there has been in this country tends to confirm these findings.
Neglect and abuse, whether sexual, physical or emotional, are domestic problems. They almost invariably take place in the home. The idea that removing a child from school will make him or her less likely to be abused is, generally speaking, nonsense.
Another thing which the person commenting here yesterday said was this:
Would you not agree that even within those groups the overwhelming majority of children were not abused?
If we are talking about children with special educational needs and disabilities, then this is tricky to answer. It depends what you mean by an overwhelming majority. In studies both here and the USA, some of them enormous, it was found time and time again that children with special needs were neglected and abused far more than children without such difficulties. How much more likely was they to be abused or neglected? Thinking now about those with learning difficulties and behavioral problems, one piece of research, (Sullivan & Knutson, 2009) found that:
The children at highest risk were those with behavioral disorders. Their risk is seven times higher for neglect, physical abuse and emotional abuse, and 5.5 times higher for sexual abuse than are children without disabilities.
Consider that statistic carefully; a child with behavioral difficulties is seven times as likely to be neglected or physically abused. What is truly horrifying is that in the largest of such studies, of over 50,000 children in Nebraska, (Sullivan, 2000), it was found that overall, a third of children with special needs and disabilities had been neglected and/or abused. Returning then to the comment made yesterday, in which I was invited to agree that the overwhelming majority of children were not abused, then we must ask ourselves if we view 66% as an overwhelming majority? Around 33% of children with special educational needs are abused by their family and friends, while about 66% are not. I'm not sure that I would call 66%, an 'overwhelming majority'.
Here then is the implication for home education. If we assume, and I guess that most home educating parents will do so, that home educators are no more likely to be wicked or abusive than other parents, then it is also fair to say that they are no more virtuous than other parents. That is to say that the levels of neglect and abuse inflicted by home educating parents are likely to be similar to those carried out by parents with children at school. What this means in plain terms is that a third of home educated children with behavioral difficulties are likely to be neglected or abused by their parents.
Tomorrow, we will look at the implications of these percentages in practical terms when it comes to overall rates of abuse for home educated children. Because as we all know, a very large proportion of home educated children are on the autistic spectrum, have ADHD, or various types of behavioral difficulties. This means of course, that the proportion of home educated children being neglected and abused is likely to be far higher than in the school population as a whole.
Tuesday, 8 October 2013
Is home education an educational concern?
My daughter has now gone back to Oxford and I have been musing about the extent to which the concerns of professionals around home education actually involve education itself. When speaking to teachers, social workers and so on about this subject, it is very noticeable that education itself very seldom comes up during the conversation. This is probably because although teachers, like all other specialists, try to make what they're doing sound very complicated and hard, they know really that any fool can teach a child any subject at all. No, it is not education that tends to be the focus of discussions about home education, but rather the wisdom of keeping a child within the family and not letting her mingle with others for six or eight hours, five days a week.
The question of possible abuse or neglect sometimes comes up in the course of such conversations, but this is more as a theoretically increased risk; it isn't seen as being a huge problem. By far the greatest cause for concern is the extent to which home educated children present as different; which is to say a bit weird and not like other kids of similar age. Many, perhaps most, teachers have come across the occasional home educated child who is now at school or college and they often remark that these children and young people come across as outsiders, not able to connect with their peers in the same way that those who have attended school from the age of four or five seem to do. It is also observed that the longer children have been out of school, the stranger and less normal they appear to be. This is felt to be a bad thing for the children themselves, making it hard for them to get along with others.
Now I obviously cannot be expected fully to share such feelings and yet there is no doubt at all that there is something in this. Many home educated children have been withdrawn from school because they have been bullied. Often, this bullying has been because they are different in the first place. If the child is then taken from school and kept with the mother for a a few years, it is hardly to be expected that this would have the effect of making him or her more like other children; quite the opposite in fact.
This then is in my experience the point which most worries professionals, that children who do not attend school tend often to become different from other children of their age. They think differently and behave and talk differently. Parents might find this a pleasing thing, because in many cases their child talks, thinks and behaves more like the parents than he does other children of his age. This cannot help but be flattering to a mother or father! It would be interesting to know what, if any, the implications of this might be when children become adults. Do they settle down and become like everybody else or do they remain slightly off-beam and perhaps a little eccentric? Is there any correlation between this and the length of time that a child is out of school? Is it more likely to be the case with children who were deregistered due to bullying? Is some of this perceived strangeness attributable to the relatively high proportion of home educated children on the autistic spectrum? I feel that there is scope here for somebody's thesis or research project.
The question of possible abuse or neglect sometimes comes up in the course of such conversations, but this is more as a theoretically increased risk; it isn't seen as being a huge problem. By far the greatest cause for concern is the extent to which home educated children present as different; which is to say a bit weird and not like other kids of similar age. Many, perhaps most, teachers have come across the occasional home educated child who is now at school or college and they often remark that these children and young people come across as outsiders, not able to connect with their peers in the same way that those who have attended school from the age of four or five seem to do. It is also observed that the longer children have been out of school, the stranger and less normal they appear to be. This is felt to be a bad thing for the children themselves, making it hard for them to get along with others.
Now I obviously cannot be expected fully to share such feelings and yet there is no doubt at all that there is something in this. Many home educated children have been withdrawn from school because they have been bullied. Often, this bullying has been because they are different in the first place. If the child is then taken from school and kept with the mother for a a few years, it is hardly to be expected that this would have the effect of making him or her more like other children; quite the opposite in fact.
This then is in my experience the point which most worries professionals, that children who do not attend school tend often to become different from other children of their age. They think differently and behave and talk differently. Parents might find this a pleasing thing, because in many cases their child talks, thinks and behaves more like the parents than he does other children of his age. This cannot help but be flattering to a mother or father! It would be interesting to know what, if any, the implications of this might be when children become adults. Do they settle down and become like everybody else or do they remain slightly off-beam and perhaps a little eccentric? Is there any correlation between this and the length of time that a child is out of school? Is it more likely to be the case with children who were deregistered due to bullying? Is some of this perceived strangeness attributable to the relatively high proportion of home educated children on the autistic spectrum? I feel that there is scope here for somebody's thesis or research project.
Labels:
ASD,
autism,
bullying,
home education,
socialisation,
UK
Friday, 3 May 2013
School as a refuge from violence and fear
For many home educating parents, schools are seen as bad places. They are institutions where their children’s special educational needs are not met or where ferocious bullying drives children to the point of suicide; to give just two examples. There is another side to this though. For some home educated children, school is a refuge; the only safe and stable point in their lives and being removed from it can be a disaster which results in great unhappiness or, in extreme cases, injury or death. I am sure that many readers will be familiar with the death of a home educated child in Barking a couple of years ago. Here is the summary of the Serious Case review:
http://www.bardag-lscb.co.uk/Publications/Documents/child-t-executive-summary.pdf
As will be recalled, the mother was very disturbed, argued with everybody and ended up by killing her child, who was probably on the autistic spectrum, by forcing him to drink bleach.
I draw attention to this case not because I think that a lot of home educating parents are likely to harm their children, nor to appeal for better and more intrusive monitoring of home educated children. Rather, I want to remind people that school is sometimes the best thing in a child’s life and that it can be vastly preferable to what is going on at home. I am not a great fan of schools, but I think that home educators sometimes forget how good they can be for children; providing them with a haven of safety and the bare bones of a stable life. Not everybody is cut out to be a home educator and for those who cannot cope with having their children around too much; schools fulfill a vital role, both for parents and children.
Labels:
ASD,
Barking and Dagenham,
death,
home education,
Serious Case Review
Tuesday, 8 January 2013
Non-professional diagnoses
I was interested to see yesterday a couple of people making diagnoses of mental disorders without even meeting the person upon whom they were passing judgement. This is not uncommon in some home educating circles. On Cheryl Moy’s blog, at which we looked yesterday, somebody left a comment about the psychologist whom her son saw. She said;
This guy sounds like he is on the autistic spectrum in a big way.
There is something stupendously offensive about this sort of casual use of ‘autistic’ being used just to indicate a person who seems to lack empathy! And of course on here, somebody commented, calling me;
a man who displays such obvious traits of serious personality disorder
Now of course when adults engage in name calling of this sort, it is a bit of harmless fun, although some people will obviously be offended at the idea of using ‘autistic’ as a catch-all phrase for people they don’t like the sound of, as we saw done on Cheryl’s blog yesterday. Doing it to children can be a little more serious.
I think that most of us have come across home educating parents who say that their children are on the spectrum or dyslectic, despite never having been properly diagnosed. It is pretty common and I am not of course the only one to remark upon it. What motive could any parent have for doing this?
Nobody likes to think that they have a stupid, lazy or unpopular child. Of course we all like to kid ourselves that our children are talented, well liked and creative. As long as they are at home with us, we can continue to believe this; it is when they go off to school that we find that others do not share our own unrealistic views of our children! It can be something of a shock to find that your gifted child is falling behind in reading or has no friends. Is it because your parenting skills were defective? Is the kid idle; is that why he is not achieving academically? Why has he no friends? Perhaps he is surly or spiteful and that is why nobody wants to play with him…
There is a far better explanation than this; one which lets us off the hook entirely! My kid has no friends because he has Asperger’s. Or he is struggling with reading because he is dyslectic. This sort of thing removes at a stroke the possibility that your parenting was at fault or that you have a slow witted or unpleasant child.
Middle class children of course tend to be informally diagnosed in this way more than working class kids, simply because their parents are more prone to anxiety and guilt. They are also more likely to be familiar with disorders like ASD and so are able to tailor the symptoms to fit their children. This is a fascinating topic and one of which I have had a good deal of experience from the quarter century that I was working in East London with children with special educational needs. I wonder if anybody has any particularly interesting examples of this syndrome which they would like to share?
Thursday, 3 January 2013
Prominent British home educators
I suggested yesterday that the great majority of those prominent in the world of British home education have either learning difficulties or mental illnesses. Two questions spring immediately to mind. First, is this true? Secondly, if it is true; does it matter? I want this morning to talk about the first of these questions.
I have been involved in home education in one way or another for decades. One of the things which I have noticed in recent years is that those whose names crop up over and over again often hold very strange views and tend to be very aggressive in defending these against anybody who shows any doubt that they are right. Of course, many people hold unconventional views and opinions, but those of the more well known home educators seem a little more off the wall than most and they will go to the most extraordinary lengths to attack those who believe differently from them. It is this which sets home education apart from most other fringe interests; its leaders behave as though they are protecting the interests of a cult or religion, rather than simply debating an unusual mode of education.
Obviously, when I have been the subject of attacks and smear campaigns by such people, my curiosity has been aroused and I try to find out what can possibly motivate such hatred and venom. It is not every day that I am the victim of a conspiracy to have me arrested because I am a believer in orthodox educational theories! Obviously I want to know what is going on. This has led me to examine the backgrounds of some of these people in a little detail.
Here are a few random examples of the sort of people I am talking about. All these people will be familiar to anybody who belongs to the HE-UK or EO lists. No fewer than three mother-daughter combinations, where the mother suffers from an unknown neurological disorder which defies medical science to diagnose. Alarmingly, their daughters too begin to display similar symptoms at puberty; necessitating crank diets and quacks remedies which both mother and daughter undertake together. Many cases of self-diagnosed autistic spectrum disorder in parents who often claim that their own children are autistic too. In many cases, there has been no actual diagnosis of either parent or child. A similar picture for dyslexia and also ADHD. A well known mother, now sixty, who went to great lengths a couple of years ago to have herself medically diagnosed, at the age of fifty eight, with attention deficit disorder. Having found an obliging psychologist, she then declared that all her children must have suffered from the same syndrome.
Often, when I watch what is going on the British home education scene, I mentally tick off the disorders of those involved. There is a certain amount of head-butting currently taking place between the (dyslectic) founder of a major home education list and a (bipolar) former leader of Education Otherwise. I see this all the time; situations where every single person involved either has or claims to have a mental illness or learning difficulty.
Another feature of those home educators who draw frequent attention to themselves is very weird beliefs about other things, such as conspiracy theories. There is a good deal of overlap between this and those who also have mental illnesses and learning difficulties. The dyslectic founder of the home education list mentioned above subscribes to some really odd conspiracy theories. One of those regarded as a founding father of home education in this country is not only bipolar, but is also a fanatical believer in the idea of the New World Order.
I could go on further, giving more and more examples, but I think that readers are getting the idea. The majority of those in the public eye because of home education have either learning difficulties or mental illnesses. In many cases, these disorders are self-diagnosed; often, it is claimed that their children have the same thing. This frequently goes hand in hand with beliefs that most people would dismiss as being a bit loopy. There is a lot of overlap between the groups, so that a good number of these people have learning difficulties combined with an unconventional belief system.
In the next few days I shall be looking at whether any of this matters. In other words, should we care if those leading home educators in this country and setting the agenda for other parents have a high prevalence of problems of this sort?
I have been involved in home education in one way or another for decades. One of the things which I have noticed in recent years is that those whose names crop up over and over again often hold very strange views and tend to be very aggressive in defending these against anybody who shows any doubt that they are right. Of course, many people hold unconventional views and opinions, but those of the more well known home educators seem a little more off the wall than most and they will go to the most extraordinary lengths to attack those who believe differently from them. It is this which sets home education apart from most other fringe interests; its leaders behave as though they are protecting the interests of a cult or religion, rather than simply debating an unusual mode of education.
Obviously, when I have been the subject of attacks and smear campaigns by such people, my curiosity has been aroused and I try to find out what can possibly motivate such hatred and venom. It is not every day that I am the victim of a conspiracy to have me arrested because I am a believer in orthodox educational theories! Obviously I want to know what is going on. This has led me to examine the backgrounds of some of these people in a little detail.
Here are a few random examples of the sort of people I am talking about. All these people will be familiar to anybody who belongs to the HE-UK or EO lists. No fewer than three mother-daughter combinations, where the mother suffers from an unknown neurological disorder which defies medical science to diagnose. Alarmingly, their daughters too begin to display similar symptoms at puberty; necessitating crank diets and quacks remedies which both mother and daughter undertake together. Many cases of self-diagnosed autistic spectrum disorder in parents who often claim that their own children are autistic too. In many cases, there has been no actual diagnosis of either parent or child. A similar picture for dyslexia and also ADHD. A well known mother, now sixty, who went to great lengths a couple of years ago to have herself medically diagnosed, at the age of fifty eight, with attention deficit disorder. Having found an obliging psychologist, she then declared that all her children must have suffered from the same syndrome.
Often, when I watch what is going on the British home education scene, I mentally tick off the disorders of those involved. There is a certain amount of head-butting currently taking place between the (dyslectic) founder of a major home education list and a (bipolar) former leader of Education Otherwise. I see this all the time; situations where every single person involved either has or claims to have a mental illness or learning difficulty.
Another feature of those home educators who draw frequent attention to themselves is very weird beliefs about other things, such as conspiracy theories. There is a good deal of overlap between this and those who also have mental illnesses and learning difficulties. The dyslectic founder of the home education list mentioned above subscribes to some really odd conspiracy theories. One of those regarded as a founding father of home education in this country is not only bipolar, but is also a fanatical believer in the idea of the New World Order.
I could go on further, giving more and more examples, but I think that readers are getting the idea. The majority of those in the public eye because of home education have either learning difficulties or mental illnesses. In many cases, these disorders are self-diagnosed; often, it is claimed that their children have the same thing. This frequently goes hand in hand with beliefs that most people would dismiss as being a bit loopy. There is a lot of overlap between the groups, so that a good number of these people have learning difficulties combined with an unconventional belief system.
In the next few days I shall be looking at whether any of this matters. In other words, should we care if those leading home educators in this country and setting the agenda for other parents have a high prevalence of problems of this sort?
Wednesday, 2 January 2013
Community leaders
One of the things which has amused me over the years is the way in which individuals manage to portray themselves as the leaders of some community or other. It happens with Caribbeans, Muslims, Jews and various other minorities. All too often, these people are chancers who are really speaking only for themselves and a small group of like-minded friends. The same thing has happened with home education and the result is that the pushiest and most vociferous end up representing the majority of parents; at least in the eyes of the government, local authorities and so on. Why else would so many local authorities advise newly home educating parents to contact Education Otherwise?
In fact, a very small group of people make most of the noise about home education in this country. Talking to most ordinary parents, those who do not belong to so-called ‘support groups’, you will find, for example, that almost all of them regard monitoring by their local authority in much the way that I did myself; that is to say as a necessary nuisance. If you ask any of those whom we might call the ‘community leaders’ though, you will find a very different view being put forward. This is the case with a number of other aspects of home education; a tiny group manages to make their own odd agenda appear to be the consensus view.
Now although there is only a small core of very militant home educators or former home educators involved in this business, they are very well organised and work constantly to ensure that their extreme views are accepted as being the norm. I have explained before how this is done and I do not want to go into it again now. It is enough to say that perhaps fifty or a hundred people at most manage to create the illusion that they speak on behalf of the tens of thousands of home educating parents in Britain. This is a very small and self-selected group and what I have noticed is that almost all of those whom I have learned anything about, share certain characteristics. I do not think that they are typical of home educators in general. One of the things which I have observed is that almost without exception, the high profile home educators have certain difficulties. I shall go into this in detail either tomorrow or the next day, but for now I will say that nearly all the people one sees representing themselves as speaking on behalf of home educators either have, or claim to have, some kind of learning difficulty or mental illness. These range from dyslexia and attention deficit disorder to being bipolar and autistic. In many cases, these problems have been self-diagnosed, but that in itself is interesting.
I shall not be naming names, but talking in general terms. Mind, the way that some of these people boast of their problems through the medium of blogs and so on, there is no real need for secrecy! I want to explore the possibility that much of what is being done by the leaders, or apparent leaders, of home education in this country is actually counter productive and causes more trouble than it is worth for ordinary parents. I also want to look at the extent to which their activities might be influenced by, or even a direct consequence of, their own disorders.
In fact, a very small group of people make most of the noise about home education in this country. Talking to most ordinary parents, those who do not belong to so-called ‘support groups’, you will find, for example, that almost all of them regard monitoring by their local authority in much the way that I did myself; that is to say as a necessary nuisance. If you ask any of those whom we might call the ‘community leaders’ though, you will find a very different view being put forward. This is the case with a number of other aspects of home education; a tiny group manages to make their own odd agenda appear to be the consensus view.
Now although there is only a small core of very militant home educators or former home educators involved in this business, they are very well organised and work constantly to ensure that their extreme views are accepted as being the norm. I have explained before how this is done and I do not want to go into it again now. It is enough to say that perhaps fifty or a hundred people at most manage to create the illusion that they speak on behalf of the tens of thousands of home educating parents in Britain. This is a very small and self-selected group and what I have noticed is that almost all of those whom I have learned anything about, share certain characteristics. I do not think that they are typical of home educators in general. One of the things which I have observed is that almost without exception, the high profile home educators have certain difficulties. I shall go into this in detail either tomorrow or the next day, but for now I will say that nearly all the people one sees representing themselves as speaking on behalf of home educators either have, or claim to have, some kind of learning difficulty or mental illness. These range from dyslexia and attention deficit disorder to being bipolar and autistic. In many cases, these problems have been self-diagnosed, but that in itself is interesting.
I shall not be naming names, but talking in general terms. Mind, the way that some of these people boast of their problems through the medium of blogs and so on, there is no real need for secrecy! I want to explore the possibility that much of what is being done by the leaders, or apparent leaders, of home education in this country is actually counter productive and causes more trouble than it is worth for ordinary parents. I also want to look at the extent to which their activities might be influenced by, or even a direct consequence of, their own disorders.
Labels:
ADHD,
ASD,
Asperger's,
bipolar,
dyslexia,
home education
Friday, 20 July 2012
Folies a Deux in some high profile home educating families
I have in the past been reproved for suggesting that many home educators are a bit strange. People commenting here on the notion have reminded me that home educators on the internet may not be at all typical. That there are strange home educating parents is indisputable; every time I shave in the morning, I see one peering out at me madly from the mirror. Could it be though that I am arguing from the particular to the universal or even projecting my own manifest abnormalities upon others? It would be a rash person indeed who discounted this hypothesis out of hand!
I want to look today at some of the high profile parents who have a great influence on how home education is viewed. They are the ones who appear in newspapers, mount campaigns against local authorities and central government, make hundreds of Freedom of Information requests and patrol the internet looking for heretics.
Before I go any further, I want to make it clear that I am not saying that all, most or even many home educators are as peculiar as those whom I wish to examine. What I am claiming is that the behaviours displayed are unique to the home educating world and that this makes them worth considering.
I have now come across half a dozen well known home educating mothers who have the following in common. They have daughters to whom they are very attached, either because they are only children or because there is a large gap between the daughter and other siblings. They are all youngest children. The mothers all claim to suffer from various syndromes and typically, doctors are unable to find anything wrong with them. They are forced to either go private, insist upon further tests or resort to alternative medicine. Alarmingly, around the start of puberty, their daughters begin to display similar unidentifiable disorders, both physical and mental. The mothers say that the child is a ‘mirror’ or ‘carbon copy’ of themselves.
Here is one mother talking about her efforts to have herself, at the age of fifty nine, diagnosed with ADHD:
Two of my kids have an ADHD diagnosis (after 10 years of trying) and I have just had mine confirmed as primarily innatentive type. I am trying to explore in a less desperate way than I did when seeking diagnosis to see if I can learn little things that can make a big difference.
Getting diagnosed was a traumatic struggle (and that is no exaggeration), the cards are stacked against you if you have ADHD due to the incompetence and tendency to lose things of the NHS. I may blog about in another post if I find I can without endangering my blood pressure, not there yet … We are going around the houses with the NHS at the moment for a diagnosis for my last child, she presents unusually as well but is almost as a carbon copy of me.
As may be seen, the mother is determined that the child will have the same disorder as she herself. A few months later, the daughter is displaying strange physical symptoms:
whenever she ate something with even the tiniest bit sugar in the same thing happened and it was accompanied by stomach pain. Reluctantly, as you can imagine with a 13 year old girl, she gave up sugar. It is very surprising what has sugar in it and there were very few things we could buy, including most sliced meats.
So all was fine for a few months then she started reacting to all food…
A thirteen year-old girl whose mother is keen for her to have ADHD is now reacting badly to eating any food. She has, ‘hollow eyes and pale complexion and lack of energy’ Can anybody see a connection here? The mother’s remedy is a crank diet and alternative medicine.
Three other mothers of thirteen year old-girls have variations of ME and their daughters develop the problem at puberty. In every case, this involves endless rounds of visits to doctors, often combined with strange diets as the parents self diagnose food allergies, gluten intolerance and so on. This is usually after GPs have told them that there is nothing wrong with the child. Four of these mothers also believe, without any diagnosis that their children are on the autistic spectrum.
I am, as I say, not claiming that this sort of thing is very common. What I am saying is that some of the well known names in British home education are martyrs to this syndrome and it affects their outlook tremendously. Some of these mothers give interviews, appear in newspapers and represent their own views as being typical of home educators in this country. What I will say about this sort of business is this. I have never heard of a woman approaching sixty who is determined to have herself diagnosed with ADHD. This is completely weird. It is curious that at puberty, the daughters of this group should develop problems with eating, auto-immune disorders, ME, ADHD and so on and that their parent should also be victims of these things. These are extreme cases, but one cannot help notice that while the parents of schooled children tend to shy away from diagnoses of things like ADHD or autistic spectrum disorder in their children, quite a few home educating parents are dead keen on the idea. One often hears home educating parents not only speculating that their children are on the spectrum or have ADHD, but wondering whether they themselves had these things as children.
I would be interested to know if readers have spotted this kind of thing happening. I am particularly keen to know if anybody has seen it in parents who are not home educating? I never have and at the moment I incline to the view that it is something which is exclusive to home educators. Not as I say all or even most, but it definitely looks to me like a well defined subset within the home educating community.
Labels:
ASD,
attention deficit,
food allergies,
home education,
ME,
Munchausens
Saturday, 23 July 2011
Home educated children on the autistic spectrum
Anybody pushing a child around in a wheelchair may expect generally to receive favourable treatment from the public. People make allowances, move aside and are tolerant of odd behaviour from the person in the wheelchair. It is clear that a disability is involved and so passers-by wish to appear accepting and compassionate. How very different is the attitude encountered if one is with a child who looks like a little angel but who is prone to snatching things away from other children and pushing them over if they object. The indignant looks which parents or carers receive, particularly if they are trying to extinguish such behaviour by not reacting to it when exhibited by the child in question. The kid may have a disability every bit as real as the child in the wheelchair, but of course autism does not show in the same way. The challenging behaviour is perceived as aggression or sheer naughtiness. An unspoken assumption is that it is being tacitly condoned by the adult caring for the child, especially as I say if the adult reacts calmly to the apparently bad behaviour of the child. Other parents will mutter to each other, ’Little thug! And his mother didn’t say a word to him, didn’t even tell him off!’ Useless to explain that shouting at a child on the autistic spectrum will just make everything ten times worse.
One can see why parents who have to endure this sort of thing every day might get a little ratty with those who do not understand the special difficulties which their children have. One can quite understand why they might get irritated when a local authority officer offers well-meaning but foolish advice for dealing with a syndrome about which she so obviously knows nothing at all. To that extent, one can see why some home educating parents of children on the autistic spectrum resolutely refuse to have any dealings with their local authority. There is however another side to this; one which many home educating parents don’t see.
Living with a an autistic child can be an absolute nightmare. In addition to the autistic features, the child might be hyperactive, need little sleep and have a variety of extremely odd habits. One child might have an obsession with collecting shoes and throwing them out of the window. Just imagine that, if you live on the tenth floor of a tower block and are cooking a meal. Your baby is asleep and you realise that your non-verbal eight year-old has managed to get a window open and throw everybody’s shoes out! What do you do? Do you wake the baby and make a family trip downstairs to collect the shoes? The lift is out of order again, so this is no slight adventure. Although you know he can’t help it, won’t you get the tiniest bit irritated at this sudden emergency caused by your child? Or suppose that your daughter has an obsession with laying bottles on their side, because seeing them standing upright makes her distressed? There you are, just getting ready to watch Eastenders and you discover that she has laid a large bottle of cooking oil on its side and the kitchen floor is now awash with the stuff. Ready to snap yet? Of course, some parents do snap. They hit their children or lock them up out of the way in their room. I have seen an autistic child’s bedroom with a padlock fixed to the outside to keep the kid from wandering in the night. For some of these parents, having the child at school all day is the only thing keeping them from going mad themselves. And on top of this, they also need respite care as often as they can get it at weekends.
Children like this are at a greater risk of being hit by their parents. I am not talking about a measured smack, either. I am talking of all the frustration and grief boiling over until the parents beats the child. This sort of thing happens and is a hazard to children with certain syndromes. If a parent who is just about coping were then to have this difficult child with her all day, it is a racing certainty that she would snap at some point. This is not to say that they do not love their children, but nobody who has not spent time with such children can have the remotest idea of the pressures that are at work. A result of this is that when the parent of such a child announces that she is rejecting all future help and will from now on be spending twenty four hours a day with her child; alarm bells start ringing.
I have spent a good part of my life working with both children and adults with various problems and used to foster a five year-old kid with Heller’s Syndrome; a type of late onset autism. By the end of the weekend, I was almost at my wits end. Often, the fears and behaviours of children and young people on the autistic spectrum are not at all accessible to reason. One cannot sometimes explain to them that there is nothing to be afraid of on an escalator going down to a tube station. They might simply go mad with panic and claw and bite until you take them out of the station. Or it might be something else entirely that causes problems. I know that I could not spend twenty four hours a day with some of the children with whom I have worked and I know also that their parents too would be unable to do so. This is one reason why local authority officers are sometimes a little concerned about a decision to home educate such a child. Some parents here have expressed annoyance at the ignorance of these people, but in a sense, the more that they know, the more that they are likely to be uneasy about the idea of home education.
One can see why parents who have to endure this sort of thing every day might get a little ratty with those who do not understand the special difficulties which their children have. One can quite understand why they might get irritated when a local authority officer offers well-meaning but foolish advice for dealing with a syndrome about which she so obviously knows nothing at all. To that extent, one can see why some home educating parents of children on the autistic spectrum resolutely refuse to have any dealings with their local authority. There is however another side to this; one which many home educating parents don’t see.
Living with a an autistic child can be an absolute nightmare. In addition to the autistic features, the child might be hyperactive, need little sleep and have a variety of extremely odd habits. One child might have an obsession with collecting shoes and throwing them out of the window. Just imagine that, if you live on the tenth floor of a tower block and are cooking a meal. Your baby is asleep and you realise that your non-verbal eight year-old has managed to get a window open and throw everybody’s shoes out! What do you do? Do you wake the baby and make a family trip downstairs to collect the shoes? The lift is out of order again, so this is no slight adventure. Although you know he can’t help it, won’t you get the tiniest bit irritated at this sudden emergency caused by your child? Or suppose that your daughter has an obsession with laying bottles on their side, because seeing them standing upright makes her distressed? There you are, just getting ready to watch Eastenders and you discover that she has laid a large bottle of cooking oil on its side and the kitchen floor is now awash with the stuff. Ready to snap yet? Of course, some parents do snap. They hit their children or lock them up out of the way in their room. I have seen an autistic child’s bedroom with a padlock fixed to the outside to keep the kid from wandering in the night. For some of these parents, having the child at school all day is the only thing keeping them from going mad themselves. And on top of this, they also need respite care as often as they can get it at weekends.
Children like this are at a greater risk of being hit by their parents. I am not talking about a measured smack, either. I am talking of all the frustration and grief boiling over until the parents beats the child. This sort of thing happens and is a hazard to children with certain syndromes. If a parent who is just about coping were then to have this difficult child with her all day, it is a racing certainty that she would snap at some point. This is not to say that they do not love their children, but nobody who has not spent time with such children can have the remotest idea of the pressures that are at work. A result of this is that when the parent of such a child announces that she is rejecting all future help and will from now on be spending twenty four hours a day with her child; alarm bells start ringing.
I have spent a good part of my life working with both children and adults with various problems and used to foster a five year-old kid with Heller’s Syndrome; a type of late onset autism. By the end of the weekend, I was almost at my wits end. Often, the fears and behaviours of children and young people on the autistic spectrum are not at all accessible to reason. One cannot sometimes explain to them that there is nothing to be afraid of on an escalator going down to a tube station. They might simply go mad with panic and claw and bite until you take them out of the station. Or it might be something else entirely that causes problems. I know that I could not spend twenty four hours a day with some of the children with whom I have worked and I know also that their parents too would be unable to do so. This is one reason why local authority officers are sometimes a little concerned about a decision to home educate such a child. Some parents here have expressed annoyance at the ignorance of these people, but in a sense, the more that they know, the more that they are likely to be uneasy about the idea of home education.
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