Wake Up To Wakefield.

I've been reading some blog posts on the recent Autism One conference in the US. Most of the posts have centred around two skeptics, Ken Reibel and Jamie Bernstein, being removed by armed police officers after being identified by conference organisers. Orac over at Respectful Insolence(http://scienceblogs.com/insolence/)
has all the goss on what went down and links to the blogs of those evicted which are well worth a read. See Expelled, Anti Vaccine Style. 2011 Edition. post.

There are many aspects to both what occured with Ken and Jamie, and the presentations on offer as outlined by Orac that are concerning. But what really jumped out at me was the address by Andrew Wakefield on the topic of Munchausens by Proxy, and the actual case of five children being removed from their parents care. Firstly let me state I am not familiar with the case in question. In fact a google search takes you to several alternative medicine type sites and Age of Autism. None of which I am prepared to link to. According to these sites the five children have been removed by authorities on the grounds of suspicion of Munchausen by Proxy in one or both parents,(MbP is a complex and disturbing psychological disorder). Apparently the parents have maintained their children all have Autism. Obviously medical authorities do not agree with the parents and feel the children's wellbeing is jeopardised by remaining in their care. Yet there are supporters of the parents such as Age of Autism, and evidently Andrew Wakefield who seem to be suggesting the removal of the children is part of some grand conspiracy. Anyway the complexities of this case are not the point of this post.

Iv'e been to my fair share of conferences over the years. And have even presented at a couple. It is customary in my experience when attending seminars or conferences that those who speak on a given topic are recognised as having some level of expertise in said topic. Whether through direct experience, work, or research. So what puzzled me about Wakefield giving this talk was how he could possibly be qualified to present a paper on the topic of Autism and Muchausens by Proxy. As someone trained in Gastroenterology he would  be well versed in topics related to the relevant body parts and their illnesses , which does not include the brain. Despite having his medical license revoked in the UK, I am sure he could still come up with a topical address at an event like AutismOne within his field of experience. Instead he has wandered into territory that is far outside his knowledge base. That in itself isnt really a great surprise if youve followed the rise and fall of Andrew. But what it does suggest to me is an incredibly arrogant assumption that those people attending the conference would not question his capacity to present on such a complex issue. ( I am assuming of course he is not friends with this family so has no intimate knowledge of the case.)

Maybe it's just me, but when I read a conference programme I always check the credentials of those presenting as part of determining what I might attend. I mean why would I want to see an address on Autism research being presented by a plumber? So it occurs to me that it shows a real lack of respect for the intelligence of the parents attending this conference by Wakefield. This should serve as a wake up call to people that this man feels entitled to talk on any subject he chooses, even those outside his area of expertise, and that they will buy it. Furthermore it seems that in his presentation there was a wilful attempt to create distrust of government authorities by referring to a conspiracy. This is not just arrogance but manipulation. Those who support and admire Wakefield should be aware they are possibly being indoctrinated into a way of thinking that is neither healthy or helpful.

It seems to me that Wakefield is desperate to maintain relevance within certain sections of the Autism community any way he can. Now he cannot practice medicine, Autism, and more specifically desperate parents, are his new gravy train. Perhaps this analysis seems overly harsh and there is a genuinely good explanation for why he is talking on a topic he knows next to nothing about? If there is I am happy to hear it and stand corrected.

Harri's a Star.

 My little guy featured on the front page of the Autism Science Foundations' Annual Report. See top right.

http://www.asf2010annualreport.org/

Sleep.

In the preceding week my husband and I moved into our new home extension. This has meant setting up a baby monitor in Harri's room so we can hear if he stirs during the night. Having an ear in his bedroom, so to speak, has been a real insight into his sleep patterns, and lack thereof. Not a night goes by that he does not wake. Sometimes briefly but often for an extended time of an hour or two. Occassionally he is happy to babble away and eventually drift off again, but more often he will cry out. He is ready to get up, even at 2am. Once upon a time we would pick him up to calm him, or give him a drink (water not whiskey). We have learnt that doing this only creates an expectation that he is getting up which leads to much distress when he is placed back into his cot. This means listening to his heartbreaking cries until he eventually wears himself out. Due to his strong need for rituals picking him up or engaging with him only creates expectations the same will occur the following nights. So we go through this Cry it Out process every few weeks.

When I mentioned this insomnia previously to his therapist she stated that in her experience it was often the actions of parents that led to sleep disturbances in our kids. I stared at her blankly as I knew his constantly disrupted sleep was nothing we were causing. I also know there are many ASD children being prescribed Melatonin to help with sleep issues so it is clearly a recognised phenomenen. Anyway I didnt respond at the time as I had no come back, and agreed that perhaps once he no longer shared a room with his sister his sleep habits would improve. I had been hoping if we could completely black out his room there would be no light creating visual stimulation for him. Well after a week this has not proved to be the case. The poor little guy is clearly one of those children for whom sleep issues are part and parcel of his Autism package.

Lying there at night listening to him toss and turn and mumble and cry breaks my heart. It also leads to my own sleeplessness as I worry about how this lack of rest may be affecting his ability to learn during his sessions. I also worry about how we will ever transition him from cot to bed. Once he no longer has the high bars to prevent his ability to crawl out of bed and entertain himself I can only foresee this issue escalating.

Since his birth sleep deprivation has become a way of life for me, and to be honest for the most part my body has adjusted and I cope OK. But it seems to me to be a cruel fate that a child as young as two must deal with the pain of insomniac episodes. I know myself what it's like to be awake for hours at a time unable to switch the brain off. I imagine this must be similar to what he is experiencing, and I wish I had a solution for him. Perhaps in time we will need to consider Melatonin too.

A Post for Janet. Diagnosis or Not?

I have been unable to login or comment on this blog for the last week so have not been in a position to respond to a question in a comment below from Janet on the Normal? No Thanks post. I think it's such an important question./issue that it warrants a post of it's own. Thanks Janet.

Janet writes,  I have a 9 year old son who has never had a diagnosis, too borderline, and therefore has not had much in the way of intervention apart from years of speech therapy. He stims constantly, and when he was younger this went unnoticed at school, but I worry that he will be ostracised for it as time goes by. Paediatricians have told me to discipline him for his behaviour, but I feel it is part of some release valve for him, and as anxiety is already an issue for him denying him this would be detrimental. My question to you is, do you feel a diagnosis is useful, do you feel that access to services is worth the effort? We would probably have to see a new paed to go down that path.


My response is that a diagnosis is always helpful, particularly for children. Knowing the reasons for why people behave the way they do allows us to understand them better. With that awareness can come compassion, assistance and for the child self acceptance. Something children without the diagnosis are at risk of not getting, worse still, being harmed by unrealistic expectations and confusing punishments. Having a diagnosis opens up a world of information, treatment and access to others who can offer support and guidance. And importantly your son will be able to make connections with other ASD community members. This will increase his capacity for finding optimistic role models and peers, and to develop a positive sense of self worth.
 
I think the issues you raise in the comment are evidence of how badly things can go for a child who meanders through the school system without a diagnosis. Misunderstanding, admonishment, criticism and what must be an unrelenting confusion for the child. So yes I think a diagnosis, if genuinely warranted, is important.
 
Janet I really hope you read this post. I want you to know that I took your comment and question seriously as it is a topic I feel strongly about. I will be interested to hear your thoughts on what I have written. There is so much more I considered saying, but I am conscious that this may be difficult to read, and could raise mixed emotions. I am sure there will be wisdom shared by others to give you some more food for thought.

Bloody Blogger

Hi all, blogger is experiencing a major glitch at the moment, so although I can post, I cannot respond to comments or log in properly. This has been an issue for three days now.  When I can comment again it will be all systems go.

26/5/2011
Still no access to account. Bloody Blogger.

Normal? No Thanks.

When we try to push our autistic kids into 'normal' or NT behaviours, what does that really mean? After all there's plenty of NT kids and adults I don't want my children to imitate. Rude, aggressive, selfish, entitled, arrogant and smarmy, Ive met them all in kids as young as 6. Yes to manners, and yes to impulse control, and focus skills, and even shared attention, some non forced eye contact and social awareness. But using 'normal' as the benchmark when it can encapsulate attention seeking or neuroticism or manipulation or extreme extroversion leads me question some of the fundamental aspects of focus in behavioural therapies.

Now don't get me wrong. I'm not subscribing to the extreme position in the neurodivesity movement that says therapies for people with Autism are wrong because they do not accept the person as is. Actually I find that to be an appalling approach. I mean NT kids get sent to school to learn the things they will need to one day hopefully gain employment and live independently. Why on earth would I deprive my childen of the same opportunites? As I see it, the therapy my son is doing now is preparing him for school and life beyond and it would be neglectful of me not to do so.

I also understand the value of children learning to make some eye contact even if minimal, to learn how to interact with others. I know the best chance our kids have of forming a friendship or two is by learning some social graces. I have no problem with any of these life skills being taught. But when the main goal of therapy becomes making my child 'indistinguishable', I wonder what type of normal the people who say that have in mind?

 I also wonder if the push for normalcy is motivated by a historical legacy of fear of difference. The psychology perspective tends to look at identifying and treating mental illness and it's also the profession that has gained the most traction within the ASD treatment sphere. While this is understandable since Autism is a behavioural diagnosis, I think it's time to change some of the pathologising narratives. It's quite possible to do so, as social work ( a profession I was once part of ) does this well. Acknowledging the challenges that come with any diagnosis yet looking at the individual in context and the multitude of variables that affect outcomes for people rather than seeing the person as a diagnosis to be fixed, full stop.

I don't care if people can tell my kids are different. Deal with it people. I am hoping I can convince them not to care either. I know when my son gets older he will have the cognitive awareness to work out he isnt like the rest of the kids in his class. But what I also want him, and my daughter, to know is that all their classmates have their fair share of issues too. There'll be the kid who is overweight, the boy who cant play sport, the kid that cant keep up with the rest academically, the kid who acts out in class because he lives with violence at home, the kid that is always coming to school late and without lunch. You dont have to have Autism to struggle to make friends, to be picked on, to be different. Essentially we are all unique and quirky, just some more than others. And often the more 'normal' the person the more dull in my experience. I want my kids to know that not being normal is cool, and they are loved and accepted for who they are. This means not expecting 'normal' or indistinguishable' from them. That is an unfair expectation and I wont be party to it.

Some International Meeting for Autism Research stuff/

Many of you will know that the 10th IMfAR wound up last week in San Diego. The two studies that seem to get a regular mention on ASD blogs are discussed in the clip posted here for your viewing pleasure. With thanks to Alex Plank of WrongPlanet.

http://youtu.be/6if1NdJUiHY

So Far So Good.

Well it finally happened. Harri started with the new therapy centre this week. You know the one I was cheating with behind the back of the former service. Anyway we are two sessions in and so far I am happy with how things are progressing. At 2, he is the youngest child at the centre so is a bit of a rock star. All the staff coo and fuss when they see him. He is a cute kid after all. And he has surprised his therapist with his comprehension skills and speed of learning.

 I was particularly pleased to see how she managed him when he did his inevitable testing of her. Cheeky
monkey that he is, he pretends to not know something as basic as matching identical objects. A task he has never had an issue with but pretends he doesnt know when he is feeling bored or tired or just to test what will happen if he does not comply. I told the therapist this is what he was doing, and got one of those 'yeah, yeah' looks, as if to say poor mother can't handle the truth. Then today she tests him on matching again and of course he blitzes it, as she exclaims, oh you were testing me! Yep, I warned you, he is a cunning little mite.

Anyway he pulled out a new diversionary tactic today. As his focus started to wane he claims he wants to go to the toilet. I was speechless with surprise as he has never indicated any interest in going to the toilet. The therapist pleased at this apparent request is about to rise from the table to take him, when I point out he is playing her, and that he is not even close to starting toilet training. I couldnt help but laugh,  it was a pretty cunning attempt to get out of work. 

Now I await the inevitable conversation about my views of teaching people with Autism to act 'normal'. Something that doesn't sit very well with me. I see ABA as a tool for teaching life skills but I draw the line at the ambition of any therapist to stop ASD behaviours in an effort to have Autistic people behave as if they are not different. The way I see it they are, and there is no shame in that. Stay tuned.

So Many Questions.

Over the previous week I have been receiving updates via various Facebook 'friends' who have been in attendance at the International Meeting for Autism Research. Apart from the interesting studies up for discussion, there's been a fascinating parade of characters turning up in photos from the event. Shannon from Thinking Person's Guide to Autism, Alex Plank from WrongPlanet, John Elder Robison, author of Look Me In The Eye, and the more recent Be Different, 'Sullivan' of leftbrainrightbrain blog, Alison Singer from Autism Science Foundation and many more. San Diego really looked like the place to be in the last week if you had any interest in Autism. If you are interested in hearing about some of the studies presented there, head over to see Shannon's write up at http://thinkingautismguide.blogspot.com/

 Up for discussion are many recent studies addressing a wide range of issues, including the financial burden for families caring for a child/ren with an Autism diagnosis. Although I have to admit I did wonder why there was a need for a study on this when it seems like a no brainer to me. I suppose you need the research results to make the argument for better resourcing. If you cant show need you cant ask for greater support.

Anyway during some recent episodes of insomnia I was reflecting on the research being discussed and so many questions arose. I wish I had access to a website where you could pose questions related to research and their findings to get some answers at 1.30am.  Since I don't know of any site like that, for now I will put them up here for discussion and perhaps someone might even offer some answers.

- Is there a recognised difference between those who have Autism at birth and regressive ASD?
- Do those who regress have more severe symptoms over time?
- Is regressive Autism the reason why so much research and current theories of aetiology focus on environmental factors?
- Is it not possible that some children inherit ASD in the same way they inherit brown eyes? Purely genetic at the time of conception rather than experiencing an in utero or post natal environmental trigger?

This last question is the one that bugs me most. After reading the BAP scores people left here a couple of weeks ago this seems a plausible theory. If anyone can answer or point me in the direction of some research I'd be most appreciative. I really need to get some sleep.

Harri Broke my Brain. Then Fixed it Again

You know the saying, you dont know what you got til it's gone? Well sometimes you don't know what you had til you get it back.

The first two years of Harri's life were so difficult I lived in survival mode, as I have blogged about previously. The main reading materials were parenting books, parenting web sites and google as I desperately searched for answers to explain why my young child seemed so unhappy. (Incidentally the closest thing I found to reassurance was a book by Dr Sears on raising High Needs babies. Who knew a couple of years later his name would put a shudder up my spine? But that's another issue)

Anyway the days of using my brain for idle and professional intellectual pursuits were essentially over. And that didn't tend to bother me at the time. It appears I was oblivious to the gradual ebb of my thinking skills. That was until over recent months, post Harri's diagnosis, when I started to read lots of blogs and sites by very clever people, who had lots of other smart people commenting.  Trying to follow the analytical arguments on the threads, and the re-iterations really pushed my mind further than it had been in a while. And it's only been recently since the spiderwebs have been cast off and the mental cogs have slowly started turning again that I can see how the use it or lose it slogan is quite true.

So even though Harri's Autism diagnosis sent me spinning off on a trajectory unplanned, it has also led me to find an amazing community of smarty pants on the interwebs who are assisting me to get my intellectual mojo back. Thankyou one and all. The list of authors is too long and I would hate to inadvertently leave anyone out for recognition. Obviously the blog list (see right) contains some of my fave bloggers, and I really hope to send some traffic their way with the expectation others will benefit from them as I have.

Essentially what I am saying is that although Harri has challenges ahead, and consequently as someone who loves him madly, so do I, I'm thankful to the amazing community of bloggers and their thought provoking, often challenging posts. I know I'm never going to be the cleverest kid on the blogger block but I do appreciate the mental gymnastics others provide. And in the long run what I am learning will make me a better mother and advocate for my son. And hopefully down the track other children and families living with Autism as well.

Do The BAP.

Since the day it was suggested to us at Harri's assessment that he has Autism my husband and I have been engaged in an ongoing banter about which of the two of us is the more ASD like. At social gatherings he is the laid back, diplomatic type, whereas I tend to be more the ' tell like it is and worry later if I offended someone' kind. My hubby loves a chat on the phone whereas I dread phone calls because I find it hard to tell when it's my turn to speak, preferring to communicate by text. We both have auditory sensory integration issues too. My other half would happily live miles from nowhere on a secluded property and not miss the stimulation or company of others. Yet I would terribly. We are both a mish mash of differing characteristics that could be seen as ASD like traits.  So to settle it a while back we did the online Autism Quotient test as some of you may recall. Both he and I scored high, meaning close to the cut off for NT and moving into ASD.

Neither of us are in any way disabled by our traits and would not meet the full criteria for an ASD diagnosis (I think) though our quirks have got us into minor bother from time to time, especially mine with my forthright and frank communication style. But I think we quickly came to a place where despite our parents on both sides struggling to accept the diagnosis, we could clearly see how the two of us would make a baby like Harri.

Then not long after undertaking the AQ test I was introduced to the concept of the Broad Autism Phenotype or BAP. A quick and simple online test can be taken here. http://www.okcupid.com/tests/the-broad-autism-phenotype-test

Well wasn't that revealing? Essentially what it does is put you into one of eight possible categories with a brief explanation as to what each means. Obviously this is not a formal diagnositic tool so is not to be taken too seriously yet it probably does yield some food for thought and I have to admit the outcome for myself and my dear hubby was very accurate. So me? I have a Rigid Personality, which means I am likely on the BAP. My other half, he scored as about as high as you can go which means certainly BAP and possibly Autistic. So yes he wins hands down. Of course knowing these results means little except to provide a bit more insight into how our personalities shape the way we interact with people and the world around us and most importantly each other within our little family.

Anyway it's there for you all to have a go. Only takes a couple of minutes. I hope you'll share your results.
And if you can find another minute can you pop over to visit http://autismandoughtisms.wordpress.com/  and leave your results there too. Consider it part of a collaborative research project. Thanks.

Another Quack Bites the Dust

This topic will be better covered by other bloggers who are more familiar with the Geiers than I. But in a nutshell,  Dr Mark Geier is another anti vaccination, pro quackery scamster who flogs unproven and outrageously unethical treatments to desperate parents. The Lupron treatment he afflicted upon children with Autism is highly controversial for good reason.

Dr Geier now joins Andrew Wakefield in the halls of disgraced men and women who put profit motives ahead of ethical concerns after his medical license was recently suspended. He, like Wakefield,  exploit the fear and ignorance of parents who have fallen for the fallacy that Autism can be cured. How many more bio-med, anti immunisation heroes have to fall before parents start to question the entire industry these people make a fortune off? My guess is this will not make any difference to those parents committed to 'recovering' their kids, but at the very least this should alert them to the risks of utilising unproven, expensive and sometimes dangerous treatments.

Ive linked to a blog below that has already explored this issue and provides more insight and documentation to consider, with thanks to the author.

http://photoninthedarkness.com/?p=215/

Also see blog list at right for up to date blogs posts on this subject. Particularly Respectful Insolence.

Interesting Research

Came across this interesting abstract today at Molecular Autism. I have not read the full PDF yet, but it does appear that current research using modern technology is further identifying unique brain shapes, patterns and functions in those with Autism, to use layman terms. Much food for thought.
http://www.molecularautism.com/content/2/1/4/abstract

Got My First Blog Insult.

I wondered how long  it would take before someone came over to take a swipe at myself and this blog. To be honest I thought it would happen way before now. I comment on a lot of Autism related sites and blogs with my uniquely non dilpomatic style of communication. I know I have pissed off more than a few people along the way so am surprised it took this long to draw one out and inspire them to comment. Albeit under the brave pseudonym of Anonymous.

The comment can be seen here, http://sharon-theawfultruth.blogspot.com/2011/04/blogger-bagging.html

This gives me an opportunity to show those who doubted how nasty some people within the ASD community can get when they feel their particular perspective is under attack. Thanks Anonymous for providing a perfect example. Thanks also for giving me a blog topic for today.

Thanks also for allowing me to feel as if Ive now earnt my stripes in the bloggy world. All the blogs I follow have had their rabid detractors over time and I always wondered what I was doing wrong that I didn't have any. Apparently it's just a matter of time, and my moment has arrived.