Tuesday, 22 November 2011

Autism Awareness - or lack thereof.

I may as well warn you that this post is on autism. If you can't be bothered to read or comment then click on someone else's blog. If you do want to stick around then I would really appreciate if you would read this and comment.

I am angry. Really angry!

The last few months have been a bit slow on the media front for autism and ASD related stories. 

There have been a few features, including your usual this causes autism, and that causes autism and maybe this causes autism and probably that causes autism. I read these but always gloss over them because if we put all of this causes together the list could be endless. It is very reminiscent of that whole Daily Mail attitude towards cancer. There was a hilarious Facebook group listing all of the factors, items, lifestyle choices that would eventually cause cancer in some form in a person. I thought it was hilarious but then I am savvy enough to know that rags like the Daily Mail thrive on scaremongering amongst the general public, the same public that lack the capacity to think for themselves.

However, as a good friend of mine also noted, lately every article on autism and specifically on its mythical causes, have had attached to these, copious amounts of reader comments. It is these comments that I would like to talk about.

These comments worry me and their lack of awareness regarding autism and ASD related is frightening. In the last few weeks, I have been helping A's high school and some of his after-school activities raise awareness of autism. A lack of awareness creates barriers for him and all other kids on the spectrum. While the school is fantastic and I am very happy with it, there has been some bullying in the first few weeks. Low level stuff, really but stuff that could have been avoided if the populace knew that A is autistic. The school and the parents of kids on the spectrum do not want to single out anyone in particular as being different and it's been tricky trying to negotiate a way of raising awareness that doesn't single out any of our kids, especially, I find when dealing with autism where it affects the kids in very different ways. We're still trying to come up with ways of combating this. A way that would help the school population understand that these kids, the ones who act a bit strange and seem a bit odd, are that way for a reason. This week we are targeting parents, trying to get them to understand first so that they can answer any questions that the kids may have.

I have blogged before about A's love of breakdancing. What I failed to mention was how he very nearly gave it all up a few months go. The class teacher, despite my constant emails and messages failed to compensate for his autism or make the class aware of why A's behaviours were different sometimes. We had a fantastic teacher earlier in the year who taught him that breakdancers were a community, that there was a sense of unity among them through a shared passion. This new teacher however, seemed to be preoccupied with creating a highly competitive atmosphere and A was excluded from crews and battles and even a class one day for being a freak and a weirdo. He hasn't been to the class for a few weeks and unless the teacher actually bothers to answer my emails to address this situation, he won't be going. We attended a breakdancing competition last week and the kids from the class were they were particularly dismissive and ignored him for the duration of the event. He was devastated and it has knocked his confidence again.  

This is the harm that a lack of awareness does. 

So back to the media. This week the Daily Mail published this headline: 
Are high-achieving parents who met at work behind rise in autistic children?
While I like to think that I am quite clever and I am university educated, this is thread is nothing new., nor is it accurate. Simon Baron-Cohen, director of the University of Cambridge's Autism Research Centre has been touting this hypothesis for a while now as part of his Right-Brained theory of the autistic mind. The Daily Mail have taken half a paragraph from an entire body of work and padded it out to make it look like breaking news. While this severe right-brained way of thinking might be true for some autists (and to my thinking this closely resembles those with Asperger's rather than classic autism) it is not true for others and certainly not all autists worldwide. I have no problem with the research behind the article but the Daily Mail's assertion that if you're clever, or study in the fields of certain disciplines, then your progeny will undoubtedly be autistic is absolute RUBBISH! 

A headline like this is sensationalist, nothing more. I could present you with thousands upon thousands of parents of autistic children who do not specialise in these fields, who are not university educated, who have not vaccinated their children and still have autistic children.  The same media attack on cancer has been happening with regards to autism and so called specialists are lining their pockets with research grants that could be better used elsewhere. As a parent of a child with autism, I welcome all research on autism, but their attention needs to be directed elsewhere in terms of educations, associated illnesses and early intervention. 

This is not what has made me angry though. Poor journalism and trendy slants from a rag such as this doesn't worry me. The ensuing comments do.

These comments are all too familiar for a parent of autistic child. I've actually had some of this nonsense said to my face! Worrying still that there is a general theme and agreement amongst the 300 comments about the MMR causing autism and generally about parents of a child with a hidden disability, milking it for all it's worth or even, that we are causing autism through bad parenting!

One enlightened individual wrote this: Autism is just an excuse for bad parenting, I don't deny it exists, but it used to be called hyperactive. I don't believe it is as widespread as we are led to believe because it's something parents feel they need to use as an excuse as they will not install discipline in the household. - YorkshireLass, York, ENGLAND.

Another had this to say: "AUTISM IS A FORM OF BRAIN DAMAGE CAUSED BY THE MMR JAB. Mostly likely caused by mercury used in the jab. this leads to the same type of sickness usually... most prominently including gastroenteritis. I dont believe in conspiracy theories generally, but i believe this to be A MASSIVE CONSPIRACY BY THE MEDICAL ORGANISATIONS." 

Sally from Swansea has some sage advice: If these male scientists wanted to avoid autism, they should have married somebody far less intelligent than them. Simple as that. - Sally, Swansea

Sally, Swansea had this to say to her detractors: Not really a good idea marrying your own kind, is it? You're obviously NOT a scientist. If you were, you would surely appreciate that parents with very different characteristics produce the better offspring.
Let's hope that I don't run into this guy while walking the streets of Edinburgh: Is it also a case of time for mothers to stop working and being adrenalized/distracted till the child is at least 5 stopping leaving it in convenient nurseries that ensure it won't be be taught certain basic rudiments via the uniquely clear understandable close bond a mother and child have in those early years preceding Primary School so it doesn't grow up semi clueless and unsure of itself before entering Primary as those places cannot begin to translate the same hands-on individual confidence growth into the child like a mother can in those vital first few years and that doesn't mean leave them in front of a PC all the time to learn during it either as we all know mother always knows best (if she's not distracted:-)
From the Land of Oz we were given this gem: I don't deny that the syndrome exists and is an identifiable condition. What I doubt is that it is as common as stated. In my experience, there are lots of educated, overly busy, professionally and personally motivated parents who don't have much of an idea of how to relate to babies and small children. They talk to them in complex sentences, insist bubs 'learn' things that are beyond their experience. Parents issue an endless stream of verbal statements and instructions that either bewilders the child or it chooses to ignore. Socialising a child takes time, consistency, effort & an understanding of the stages of learning. I know countless upwardly mobile parents who can't do it although they are of the opinion they are doing it by the book. EG pushing the child in its pram was once a great time to interact and deliver some digestible social and language 'lessons'. Now, the parent pushing the pram is chatting on a mobile phone. Discipline is a lost art though it's vital it's done well - Ana, Sydney, Australia, 22/11/2011 10:02

Apparently, we have a scientist in our midsts: This is the biggest load of crap... It is proven it is the vaccines causing the rise in Autism in our children... as well as many other diseases (autoimmune). Read up on it people... wake up to the reality of the pharmaceutical companies & the government/medical profession that peddle these poisons!! - T Marsden, Doncaster UK, 22/11/2011 10:50

It is simply disgusting that in this day and age, that people still think like this! Yes, I can sit here and be all indignant about the ignorance of other but please think of the autistic children and adults who have to put up with the press spouting this crap! 

How exactly do you think that a person who holds these views towards an autistic adult or child such as you're the progeny of academic inbreeding or your parent's didn't raise you properly or your parents and the Government poisoned you with Mercury, interacts with an autistic person? 

Do you think that they have any time for their idiosyncrasies, their meltdowns, their lack of social awareness? Do you think that they are filled with compassion when they cannot see a physical disability?

How you would feel if this was your child?

For a pretty comprehensive explanation of autism, please visit my page here


  1. I'm pretty speechless.

    In fact, I am speechless.

    Disgusted, repulsed, sickened, doesn't begin to describe how I feel after reading those comments. It doesn't bear thinking about where these vile people get their ideas because none of them are educated in the least. To think that an immunisation has caused my daughter's autism, or that I haven't raised her properly, or that she's been inbred, is quite laughable really isn't it, when so-called experts haven't yet worked out what actually DOES cause autism. I'm not a religious person but right now all I can say is "forgive them, they know not what they say."

    Their ignorance is a wonderful example of our society when it comes to disabilities and unfortunately, unless these people come into contact with a child/adult on the spectrum, give birth to one or find out they have one in their close net family, they will remain ignorant forever. The consolation we have is that our lives are far more richer than theirs, for knowing a person with special needs.

    And after saying all that, I'm still pretty speechless!

    CJ xx

  2. Sadly it continues into the next stage of education too. Sprog doesn't have a diagnosis on the autistic spectrum but we're pretty sure that as well as his ADHD he also has a mild sprinkling of Aspergers. He is also highly gifted intellectually. He also has a mild physical disability. Not a comfortable mix for the educational system.

    We'd hoped he would find things easier when he reached a more mature age. Unfortunately it is one long struggle. Despite it being a legal requirement to make allowances for his challenges - and all that boils down to is providing a method for him to record notes without needing to handwrite - you wouldn't have thought that would be a massive problem in this day and age - but apparently it is - and to be a bit tolerant of his way of processing information - ie much faster than the rest of them and resulting in difficulties in him dealing with being held back materialising as lack of motivation.

    Yet this has led to him having to leave one course because the other much older adult pupils felt it necessary to 'cut him down to size' whenever possible as they perceived his knowledge and keeness as 'uppitiness'. It got even worse when he argued with them and was later proved to be right and them wrong.

    He is now on another course and we are in constant 'dialogue' to try and get him to be afforded an education suitable to his needs.

    The comments on DM articles are always at the extreme end of human numptiness though. I remember when articles about ADHD appeared and we got the same parent bashing stuff.

    A lot of people are very thick and very ignorant. I don't mind commenters in newspapers - but it makes my blood boil when those in charge of the educational opportunities of our children make such a pigs ear of what frankly is NOT a huge complicated problem if they only left their prejudices at the door when they came in for work.

  3. oh good grief! for once in my life I actually don't know how to respond. Some of those comments were just shocking! I read them out to my 18 year old son (who is not autistic. My daughter is however), and even he was shocked and saddened. His words were 'ignorant scumbags'! Sums it up perfectly!

  4. People's ignorance amazes me at times how anyone can justify those comments is beyond me.Don't people realise our lives are hard enough at times without their silly bigoted comments.

    Makes me so angry it would take 5-10 minutes to learn why people are different yet they don't want to know. Ignorant silly people and a great post

  5. My younger daughter and her two children live with me -have lived with me since each of them were born. They are now ages 8 and 5 and both have a diagnosis of autism -the older child (girl) was diagnosed initially with PDD-NOS but that has been changed now to Aspergers and the boy's is listed as "Classic autism." Both are doing very well in school, integrated into regular classrooms (Both also have IEP's that my daughter keeps a very close eye on to assure they are being followed closely.) Both children received vaccines and my daughter did request the boy's vaccines not be administered in a multitude at one time, I don't believe, nor does my daughter, that vaccines caused the children's issues. They have both benefitted greatly because of early intervention and lots and lots of therapy from the time they were around 18-20 months of age and both attended a nursery school/special needs program for two years that helped more than can be expressed in both academic learning as well, but particularly, in social skills. Discipline can be tricky at times but one has to be constantly on the alert for a new way to grab the child's attention properly and to distract or redirect attention away from things that can (and do, often) create bits of chaos to.
    My daughter has a friend whose middle child is on the spectrum but she has never pushed anything for her child pertaining to autism other than insisting vaccines caused this! The child has had very little in the way of individual therapy and no IEP done either prior to her starting kindergarten this fall thus, no aides with her during classtime either and as a direct result, the child is getting lost in school, not receiving the attention she needs to help her cope and adjust and yes, then learn properly! Behavior issues abound there! It absolutely sickens my daughter and me to see how this child is being programmed for failure instead of being helped to reach her potential now -as well as she moves in through life. If you were to talk to most of the members of the church my family attends, you would hear many, many comments as to how they have watched my grandkids grow -not just physically -but mentally, emotionally and now they both participate regularly in Sunday School as well as main church programs usually with ease too! Oh there are times when they do exhibit some of their little quirks -like the girl who some Sundays will now willing participate in the "Sharing of the Peace" and then, the next week, totally ignore another parishioner's extended hand and really toss a cold shoulder attitude their way! But those who normally sit in our vicinity know the kids, know and accept their quirks, their skills as well as the down sides that come through now and again which makes things much easier for all concerned.
    I personally do not believe there is an epidemic of autism, per se, but that children -like my grandkids -have always been part and parcel of the community at large but years back, little was known much less understood about how to help these kids to learn and grow in all respects. Today, with early diagnosis it merely looks like there is an epidemic due to much research and additional knowledge coming through all the time!
    And to those who abhor vaccines -show me children who have been seriously ill, or even died, simply because of autism factoring in their lives but you can't say the same about children who have had various diseases -polio, measles, whooping cough, et al, can they? And I for one, would much rather have grandkids who are healthy but also have autism as they provide so much wonder, love and excitement to our lives and yes, occasionally there are problems too but sheesh, don't ALL children give us that too? They learn -just in a different way -and we have to figure out which way helps which child to learn better! My theory -for whatever it's worth!

  6. It is horrible and frustrating but it is also the reality of the world we live in that there are people less tolerant / ignorant / not willing to see that everyone is different and that is okay.

    I find it so ironic that those on the autism spectrum are accused of rigid thinking and inability to accept others point of view - when there are far more NT folk out there who are as fundamentally stuck in their rigid belief systems.

    So I continue to write about my children and autism in our lives. I talk to parents at school and educate them.

    Just yesterday I was in discussion with a group of parents about troubles with another autistic boy in our class. The mums were saying he has meltdowns on purpose when the teachers ask him to do something he doesn't want to. I was able to teach them that meltdowns can not happen on purpose, that a child with autism struggles to understand the point of non-meaningful (to them) tasks and needs to be motivated to complete these tasks or yes they will meltdown. Especially this young boy who is frustrated and unhappy at his lack of learning progress and so doesn't see the point of joining in when he percieves it will be another task he fails at.

  7. I was actually going to make this post include all of the hateful things that I've read in the last fortnight alone and I'm sort of relived that I didn't. You should be very proud of you son and thank you for sharing with him. Sometimes it takes the despicable actions of others to remind us how little we know. I'm always learning. xx

  8. Hi CJ, It's been a while! "They know not what they say! is the most frustrating part of it. You will have had it all too. "She's not THAT autistic is she, she looks perfectly fine". I'm so sick of this! xxx

  9. Thanks so much for commenting Jeni! Your grandchildren are incredibly lucky to have had such a proactive mother. Common sense and shared experiences tells us that this is always been here but just not diagnosed. We owe it to our children to do the best for them, not just vaccinating them but educating them about the differences of others. Thanks again. xx

  10. I'm glad that it still amazes you Wendy. That means that you haven't become jaded by years of listening to all of this nonsense. I forget sometimes that people can be like this and that even if they are not as vocal with their bigoted opinions, there is still a huge amount of people who know absolutely nothing about autism. Thanks for commenting :)

  11. It really is, Marita. And you are so right about the rigidity problem. I've sat in the same situation were people say things like they do this on purpose! I'm hoping that starting with the parents will make a difference. Thanks for commenting. :)

  12. Read this entry from behind my hand but have to confess to being a teeny bit amused by Aussie Bird's take on socialising and discipline. I'm just shaking my head and feeling ashamed of certain strains of mankind xx

  13. I must be living in a supportive bubble because I had no idea that so many people thought like this :( It's the downside of the internet that people can peddle such ignorant attitudes and some of their readers will nod their heads sagely and agree.  Sometimes I have wondered whether we need to put such an effort into awareness of special needs - this confirms just how important it is.  Off to share...

  14. Too right, Jen! It beggars belief that this goes on. Thanks for commenting. Xx

  15. We lived in a small village are were always surrounded by ignorance but never this vitriol! I do go through phases where I fir get people can be this ignorant and it just confirms that I have to do all that I can to raise awareness. Thanks fir commenting. Xx

  16. Rightfromthestart23 November 2011 at 00:33

    I worked with pre-school children on the autistic spectrum and their families for a number of years.  I also wrote my MEd dissertation on stress in families with pre-school autistic children.  This kind of ignorance leads parents to become isolated and unsupported.  With media representation of autism like this it isn't really suprising that people are so small minded. All of the children I have worked with have been
    amazing, challenging yes but wonderful with it.  There is work out there to try to improve conceptions but it still has a long way to go.
    People are afraid of things they don't understand if I can help in any way to help change those preconceptions by sharing my experiences please shout.
    Take care and keep fighting

  17. I actually do have a problem with Baron-Cohen's research - he seems to gloss over the fact that autism is a disability, not the extreme of normal human traits and behaviour. Also, the number of children with autism has apparently gone up in large part because children who would have gone undiagnosed or been labelled "difficult", in the case of those with Asperger's (this was happening as late as the late 80s and early 90s in the UK), or simply labelled as imbeciles and shut away in a long-stay institution, are now being understood as having a distinct condition.

    I wrote a review of two of Baron-Cohen's books here.

  18. Sadly I have come across these sorts of thinking so often in the last few years. I have a 13 year old son who has Aspergers and a daughter of 5 who we think is also ASD and awaiting assessment. I have always been a stay at home mum and both my children were the way they are from birth, vaccinations have played no part in their development or lack of. I have 3 other children who are not affected. I don' t believe there has been a rise in autism, rather a rise in understanding and awareness, although reading the above articles does make me doubt the understanding part! I seem to spend my life trying to educate people that being autistic does not equate with being stupid: some people have learning difficulties but so do many not on the spectrum.

    Blogging is a great way to raise awareness, well done!

  19. Thanks so much for commenting! You're right, of course, that dealing with this prejudice day in and day out is very stressful. I'm actually looking for guest writers for my new blog. Perhaps you could offer us insight into working one to one with kids on the spectrum. http://ayeautism.wordpress.com :)

  20. Hi Karen, thanks so much for taking the time to comment. I feel as if I should get a t-shirt printed with an explanation of autism written on it. Might make my life a bit simpler? ;)

  21. Thanks so much for commenting, Matthew. Your reviews make for interesting reading. I had read Rachael's criticisms a while ago and I've certainly found that his hypotheses do not apply to my son, nor anyone else we know on the spectrum. I like your summary of 'the extreme of normal human traits and behaviour' That, I feel, sums up the entirety of his research.

  22. Oh oh I can use my friend Jen's line "Dude, it's the Daily Fail" I had an article printed about me and PTSD and some of the comments were just untrue.

    The Daily Mail commenters are not highly enlightened individuals, and have obviously never been touched by autism.

    I now no longer read daily mail comments as they upset me too much.

  23. It's awful! But symptomatic of a much bigger ignorance in society. Thanks for commenting Kylie. xx

  24. I never cease to be amazed at the amount of ignorance that surrounds autism.(I've been told my boy is just attention seeking, also by one relative, 'give him to me for a day and I'll sort him out', that we're being too soft! and overheard one woman comment that 'that little boy is very rude, I don't think he's quite right').
     I would challenge any one of these imbeciles to handle even just a few hours with an autistic child in full meltdown. If any of them are ever directly touched by autism, I'm sure they'd quickly scuttle off into anonymity!  What worries me greatly having gone through all the stress and self-doubt and denial of the diagnostic process with my son (7 year old with aspergers) reading comments like those you've detailed or hearing those above may prevent some parents from approaching others for help?! 

  25. your new blog looks fab. I'd love to write something about my experiences it would be lovely to revisit it all again. Will get something to you in the next few weeks.

  26. all i can say is OMG.... I have a son with Autism and another son who is currently awaiting assessment... Im a stay at home mum and my 9yr old has been the way he is since birth,The MMR did not cause my sons ASD as he didnt have it as until he was nearly four...The Daily Mail commentors are obviously just ignorant on the whole subject....These ignorant remarks are what my son has to deal with every day pof his life and it saddens me, more needs to be done to make people aware of it plain and simple

  27. Hi there - I have a 10 year old son with autism and I am also a primary school teacher and I too am sick of all the negatives comments/attitudes from the general public but also from people who should know better due to their line of work. 

    My friend and I conducted a small research project where we visited 9 primary schools and delivered awareness raising workshops to some P4-P7 pupils who then presented what they had learned to the rest of the school at assemblies.  The workshops were well received and 83% of the pupils spoke to their parents/carers about what they had learned.  Through various tasks, stories and dramas we tried to make the pupils understand what it may be like to have ASD.  We tried to help them think of how they could react differently or in a more helpful way, in certain situations. 

    We also offered CPD to schools (some of them took us up on the offer).  Comments from parents/carers of participants included: we should carry out the workshops in secondary schools (perhaps as part of the transition days) and other parents expressed an interest in attending workshops themselves.

    We also ran workshops to raise awareness of Dyslexia (my daughter and my colleague's daughter both have Dyslexia).

    The whole idea was not to pinpoint any individuals but to raise awareness of the hidden disabilites.  We would love to roll this out to other schools but unfotunately don't have the funding :-(

  28. Thanks so much for commenting MrsC! I've always been upset and disgusted by peoples treatment of ASD. Raising awareness is key but incredibly hard work! Xx

  29. Thank you TH for your comment. I've lost count of how many times this was said to me when A was growing up. With the public having such a disparaging view of labels, how are these kids going to cope as adults? Xx

  30. I know and feel you pain, Banana Poet. The fight we have for our children is only further complicated by this shortsighted media approach. Thanks so much for commenting. Xx

  31. If this was the report submitted to the GTCS, then I've just read it this morning! I thought it was wonderful and thorough and commend you on your excellent work and attention to detail. There is a huge problem with a lack of awareness in schools and well as out with and I have asked schools to hold assemblies and workshops but the manpower just doesn't exist or is too expensive!

    I also blog at http://ayeautism.wordpress.com and I think you might be interested in my post on after school activities. I would love to talk more about this with you, especially regarding funding such a project. I can be contacted at ayeautism@gmail.com. Thanks for commenting! X

  32. Hi there - yes it was indeed the GTCS report.  They gave us 'funding', well they paid for 10 days supply cover so that we could visit the schools (we did all the other work in our spare time).  Thanks for your kind comments - we really appreciate them - and taking the time to read our paper.  We have had a lot of interest on the Dyslexia side of things (ran workshops at their annual conference with members of the teaching profession/educational psychologists etc).  We were also on a panel at an event during Dyslexia Awareness week and just presented our paper at the SERA (Scottish Educational Research Association) conference yesterday.  However, it has all been pretty quiet on the ASD side of things, despite us getting in touch with a number of organisations/individuals :-( I will check out your other blog - thanks.


Thanks for taking the time to comment!