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April 2010 Member Q&A: damo73 (Damian)

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Elena - former ...

April 2010 Member Q&A: damo73 (Damian)

Wed 2 Jun 2010 2:15pm
April already?!

I hope all of you have had a chance to meet Damian (damo73) by now. He has been a refreshing voice in the Talk about Autism community, and has been extremely helpful in looking after the Neurodiversity Room, along with Sara.

In case you're new to Talk about Autism, the Monthly Member Q&A is a way for us to feature our members and get to know a bit more about them by asking them questions over a month. We start off by asking everyone the same questions, and then we open the floor to everyone for further questioning. To read more about what the Monthly Member Q&A is, or if you are interested in being one of our featured members of the month, please visit this page to find our more: What are the Member Q&A's? ...And how you can participate!

Damian, we are really grateful that you've agreed to let us ask you some questions over the month of April. So let's kick things off by asking Damian the same questions that we ask every month.


1. What's your story - how are you involved with autism?

2. How did you find Talk about Autism and how long have you been with us?

3. What is your top tip to pass on to someone whose child has recently been diagnosed with autism?

4. What has been one of the most difficult encounters you've had with regard to autism?

5. If you had to describe autism in no more than 3 words, what would they be?


And just for fun:

1. What would your dream holiday be?

2. If you got stranded on a desert island, what 3 things would you take?

3. Tell us something that you really enjoy doing.


And may I ask one more? Smile Are you doing anything to mark World Autism Awareness Day on 2 April, 2010?


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  • damo73's picture

    Hello all - I look forward to your questions - feel free to ask difficult ones + engage in lively debate!

    My story with autism:

    My son Nye was diagnosed at age 2 with ASD + then went through a period of regression - age 2/3.  He came to live with me a bit before he was 5 (school age) and he is now 7.  At the time of his diagnosis, I read some extracts from books that his mum had collected and thought - some of this relates to me.  Then I read an autobiographical extract and thought - that is me (or thereabouts)!  I finally got around to getting officially diagnosed last year.

    Q2: I found Talkaboutautism through a demonstration they did at a parent group.

    Q3: As Douglas Adams would say - 'Don't panic' - your child is unique + will probably strain your preconceptions, this is a good thing for your development!

    Q4: Dealing with 'officialdom', authority + people telling me what to do and think (it won't work!).  Debating ideas honestly is fine though.

    Q5: Nature's answer to over-conformity (I have trouble with word counts).

    Q1: Going to see live blues and soul music in America and go record shopping - with my son and some good friends.

    Q2: No idea - not something I would do on purpose - probably a mobile phone with international connectivity, some food and perhaps my passport!  Unless the locals were friendly.

    Q3: Playing table tennis, reading philosophy, teaching, meeting others with Autism.

    As for tomorrow - I have my son off school, yet it is due to rain all day - was thinking of going to Dover to see Sara and have a day out, but due to the weather I think we will have a jammy morning with CBeebies!


    Damian - Retired Community Champion
  • Leanne's picture

    Hi Damian

    I may have picked your brains before about homework if I have ,please forgive me :) 

    My question for you.. What were you like doing homework when you were in Secondary school , can you offer any advice to parents on how to work with their children to get the best possible results  with the least amount of trauma .. thankyou Smile

    Leanne - Community Champion

  • JosieB's picture

    Hi Damian

    My question is kind of related to Leanne's but my son is a bit further on being in 3rd Year in Mainstream High School.  I am interested in how you found exams.  I was going to ask if the school provided any specific aids for you till I remembered that your diagnosis was later in life, but I will still ask just in case you have come across someone else on the spectrum who has gone through school examinations.

    Like most kids on the spectrum, my son has always refused to do homework based on the fact that it is school stuff that he has already done in class and doesnt see the logic in doing it again.


    Josie - Community Champion

    Josie - Community Champion
  • damo73's picture

    Hello Leanne and Josie,

    This is a complicated one!  The short answer is that I was pretty awful with homework and I struggle more with exams than I do coursework (still do!).  I fully understand the frustrations of your children:

    1. If something has been learnt and learnt well - it is pointless to do it again, unless you feel you need the practice - 'teaching your grandmother to suck eggs'.  This kind of work is a 'doddle', 'dawdle', 'walk in the park', 'boring' etc.

    2. A lot of work when I was young (and a lot of uni assignments today) are not well worded and are not clear as to what they expect in the work.  This is partly up to the tutor to make sure the student understands (takes some skill - all teachers are meant to have it, but many do not) - this is also to do with 'relevance' of the curriculum.

    3. Motivation / Interest can be a big problem - but also a gift.  If the student has no interest at all in the subject (or no sense of having achieved anything, despite many attempts) - then you are fighting a losing battle + it could lead to a meltdown.  Refusal to do work can be due to poorly given instructions and not wanting to do something badly (I am a perfectionist - do something properly or not at all - difficult when an activity is new or not well explained) / be embarassed socially / belittled about lack of ability, when you have plenty etc.

    On the plus side, if a sense of achievement, intrinsic 'fun' or 'intrigue' in a subject can be found - you will find the most hard working, obsessively diligent individual around.  The best way to achieve this in subjects being rejected is to make them interesting, clearly laid out and with achievable aims that are tangible to the student (yet teachers are meant to do this - problem is, when you have thirty in a class - all with divergent needs!).

    4. School is for 'boring stuff' - whilst home needs to be categorised as different and partly ones 'own' - thus, one perceives themselves to have a 'voice', power and autonomy to define their own actions etc. etc. - the problem here is that activities associated with school + home do not match, therefore homework is seen as a horrible imposition on one's personal space.

    Probs with exams:

    Anticipatory stress / memorising topics that are not of interest, in case the ones that are of interest aren't on the paper / getting in the exam and finding your preffered topics are not on the paper / flickering lights in old halls / sensory distractions generally - etc. etc. - this all happened to me at an exam I took last year (I still got a 2:1 - mainly because I got a distinction on a question about autism - at least one good question came up!).

    Luckily - my DSA report has recommended I now get an extra 25% time and a separate room - there should also be similar allowances made for any test/exam for AS children...surely!!!

    The good news: I now do 'homework' all day, whilst my son is at school - doing online degrees etc. - + I love academia (if not exams) + I do work as soon as it is given to me and usually hand it in a month early!  Why - because I have a firm idea now of what I am doing, had good teachers at times + good support from family, + most importantly, been able to do subjects I am interested in: Sociology, Psychology, Philosophy, Educational / Autism studies, Politics etc. - none of these subjects were available at school.  The only subjects that I liked at school were History, + occasionaly Maths and P.E. (depending on the teacher).

    So - the main point - keep it interesting to them - do you want to learn about things you have no interest, experience or confidence in?  Quantum Physics, Foucaudian archeology of knowledge, or simultaneous equations anyone?  When AS people go on about their interests, it is often the NT that goes into 'meltdown'!  Bridging this gap and finding common ground can be difficult though!

    Hope some of the above helps!


    Damian - Retired Community Champion
  • JosieB's picture

    Hi Damian

    Thanks for the great response.  I perhaps should have said that although Tom thinks he knows what he was taught and that he has picked up and doesnt need to do it again, I am sometimes finding that he has completely misunderstood what he was taught.   I agree that it is down to the teachers to find a way to communication that he understands, but on the other hand like you say, I do appreciate that social inclusion for our kids, bring a whole set of issues for teachers who have a class (and usually a far too large class) of kids with possibly a variety of issues and learning abilities and speeds, but each of as parents are responsible for our own kids and have to fight for what is best for them, usually to not much avail, unfortunately.

    As you said I have certainly spotted that Tom can completely misunderstand a question, particularly when they dress it up in a story rather than just give him the actual facts without the embellishments.  He loves the sciences, maths and PE, but I have only recently discovered that he only calls these his favourite subjects because he is good at them, not because he particularly enjoys them.

    Thanks again for that response I will certainly start talking to the school re putting in place his options for exams.

    Josie - Community Champion

    Josie - Community Champion
  • damo73's picture

    Hello Josie,

    I'm glad he likes some subjects - being good at something is a kind of enjoyment - source of pride etc.

    I had terrible science teachers who put me off the subjects - something I'm still annoyed about!  Although I 'enjoy' science documentaries on TV nowadays.  It saddens me that there are still reports saying how poor Maths teaching is (and not many scientists go into teaching).  It could be made much more interesting and relevant by people who had a passion for the subject (and not made to do it due to staff shortages and a management mentality of 'a good teacher can teach anything').  A recent TV documentary found that most primary teachers could not pass simple maths tests, although they were teaching it.

    Subject knowledge has become less prioritised + teaching (+ 'classroom management') have been highlighted.  This is obviously important, yet so is subject knowledge, passion for subject, passion for enthusing and debating with others.  A 'good teacher' has all of these attributes and is a rare thing (+ should be paid more - whilst others should not be employed at all!).  Basically, what is needed is massive government investment in education - smaller class sizes, higher pay and qualifications needed for certain roles, far improved training and CPD training etc. - in a recession, this is unlikely to happen, yet better than spending money replacing Trident!

    Why isn't more money spent in the right places (practitioners + more premises - rather than hopeless and regimented management?  Sorry managers out there!)?

    Possible answer: because control into conformist normality is seen as more important then fulfilling one's potential - the 'hidden curriculum' advances conformists, those who 'regurgitate' what they are told well, 'jack-of-all trades + masters of none' - as all learning is assessed individually (then you are expected to work as 'teams' - as well as being able to do any possible role without help or support), obediance to authority/power/hierarchy - no matter how irrelevant or illogical etc.

    Yes - it will likely be facts that are more understandable at this stage - yet the development of 'critical thinking' can help lead on to the understanding of embellishments later in life - although this goes against the 'hidden curriculum'!

    Well - that was a good rant!


    Damian - Retired Community Champion
  • Snowdrop's picture

    Hi Damian

    I have a few questions for your:

    1. if you and your son could be given a magic pill so both of you were not affected by autism anymore, would you take it & why or why not?

    2. do you believe the MMR has anything at all to do with autism?

    3. does it offend you that some parents are looking for a cure for autism?

    4. since you didn't get your diagnosis until you were an adult, how did your family react, were your parents upset that they hadn't spotted and followed anything up when you were a child?

    Thats it for now, I'm sure more may follow!

    Tracy - Community Champion


    Tracy - Retired Community Champion
  • Leanne's picture

    Hi Damian

    Thankyou for your answer,I  found it very interesting and it certainly made me think Smile I do have a few further thoughts and questions. 

     1. I find it hard not to see the point in homework because it either hightlights that you don't understand what has been taught in class or it validates that you have understood and gives you an opportunity to prove it - not only to yourself but to your teacher so that you are clear to move on to the next level. Bearing in mind that the teaching is now done on a layering basis, it is vital that the knowledge is correctly embedded to avoid problems further on. Is the child not seeing the point in something acceptable .. surely that is the difference between adults and children. How can children possibly see the point in everything and just because they don't, does that mean they shouldn't have to do it.

    2.You stated that the work was badly worded... do you mean in general or specific to you?? Do you think it is possible to teach autistic children strategies to help them cope better .. so instead of the question changing it would be the child learning how to corrrectly interpret the question involving better language analysis for autistic children ?? Again something which will prove to be invaluable later on in life.

    3. Motivation -  I go back to not seeing the point - how can children possibly see the point in what they learn at school, they have no idea what the future holds and that the skills they are learning may not be obvious to them  but they are skills that need to be learned. Everyone would be happier if they only got to do exactly what they wanted, if they could avoid boring stuff and just do what interests them but that isn't life. Enabling this side of their personality is surely setting the children up for failiure - why would any parent do that ?? If Johnathon only got to do what excited and interested him then he would be playing playstation for the rest of his life.. but where would he be playing said playstation because he would have no job/income/home. 

    4. To encourage the association that certain places have certain roles again is going to cause issues later on in life.. I am sure everyone at one time or another has had to bring work home not ideal but its life. So again this is school preparing children for  life..  do you have any suggestion on how this mind set can be changed ?? 

    You mentioned that you have an extra 25% for your exams.. how does this actually help you ?... are there any strategies that you could have been taught which would have allieviated the need for the extra time ?

    Your last statement about find stuff that interests them.. so are you suggesting that for every subject you have to find an element that interests them.. what if there isn't, should we just leave it. Are there any strategies for getting children to learn stuff just because that is what they have been told to do.Again a life strategy.. doing a job because that is what your employer wants you to do ?

    Something I find confusing with Johnathon is that he has the ability to learn but he seems to have been programmed only to find things interesting  that he finds easy and require little work.. . So is it a personality trait so be drawn to things that are easy and reject things that are difficult like learning social skills.. its very contradictory to say that he will only do things if he sees the point but surely what can be more relevant than learning things that you don't already know and that will improve your life.. just concentrating on things you already know and know well -whats the point in that ? What will be the point in Johnathon having lots of academic qualifications if he lacks the life/social skills with which to utilise the qualifications.

    Do you think there are solutions to these issues that can actually be solved by the individual taking ownership and responsibilty instead of wanting the system around them changed ?? 

    Hope its ok to ask these questions , I am very keen not only to discover the motivation behind my sons behaviours but to actively seek solutions that will improve their lives and future prospects and help move them forward.  





    Leanne - Community Champion

  • damo73's picture

    Hello Leanne,

    It is fine to ask these questions - + I see you have a lot to discuss!  I actually have made notes in order to try and unpack all the nuances!  I think you may have misunderstood some of my points (+ I will no doubt misunderstand some of yours), yet this is inevitable according to my philosophy unfortunately (to some extent).  Much of what I wrote was from the perspective of myself when younger (and to some extent now) + how these cause problems for getting someone like me to do homework.  Homework can have its uses - especially if it works, the problem we have is getting it to!

    1. The point of homework:

    Interesting debates over this at the mo - a lecturer told me the other week that the latest research suggests that when homework goes over twenty minutes it had no statistical impact on grade outcomes (just thought I'd throw that one in there!).  You say that it validates understanding of what is taught in class + gives an opportunity to prove it to oneself and others.  This is not how I saw it as a kid though - If I felt I understood something, it was enough!  Getting me to see the 'point' of expressing this (when I was poor at anything expressive - leading to misunderstandings, rejection, failure, embarrassment + eventually depression + a minor breakdown) was highly difficult.  When attempts to express are given, the way people react to these attempts is highly important in either building trust or fear responses.  You talk of the layering process in education + being clear in understanding to move onto the next level - many teachers believe that understanding has taken place when someone can do a measurable test, yet there are many levels of understanding of phenomena and ways of seeing phenomena that are essentially unmeasurable.  Although education is designed in bitesize blocks, a lot of the time children are moved onto a new block will little understanding or just a rudimentary one of the last block.  This is often descriptive rather than critical and evaluative + 'personally relevant' (an issue to be returned to later!).  There are many 'learning models' of different types of layering etc. - I quite like Vygotsky on 'scaffolding' - + transactional approaches (also see later).

    You say that children can't see the point of everything - well, nor do us adults (sorry - couldn't help that one!).  Sometimes points are more ideological that practical and are less 'needed' in the views of some.  Some skills are very useful, yet with these it can be hard to show the 'point' - unless it is communicable in a way that is understandable (I have a difficulty teaching my son to take himself to the toilet - he doesn't yet see a point for himself and doesn't have the communication skills to engage about such a concept - no matter how much rote learning, makaton, rewards etc. that have been tried - none have been successful).

    'Points' in my view are constructed and negotiated in interaction (quite difficult when someone has communication difficulties).  When a child really cannot grasp a concept in any way - can they really learn about it? - if the 'point' is not essential 'now' for safety etc. - then it is probably better to not leave it altogether, but postpone attempts to a later date.  When it is 'essential' (sometimes hard to unpack what really is and is not), then the 'usual' firm boundary stuff is probably needed (I am a very 'liberal' parent, yet we all have our limits!).  I will also return to this later in response to further questions.

    2. Either/or/both! - I was recently given an essay title that asked me to apply some concepts to my 'research area' - I read this as 'Autism + education research in general' - when I got the feedback, they had meant for me to relate it specifically to my own project.  Is this my fault, their fault, or both?  All communications are transactional + therefore problems with them are not solely any one individuals responsibility (see later on that one too!).

    Language and conceptual understanding is a difficulty with regards to this transaction - linguistic concepts can be very hard to understand, especially when one is a 'sensory thinker' - when the expressive abilities have been learnt, they are done so in an idiosyncratic way, creating a different set of concepts and linguistic usage (discourse) than what is dominant, deemed 'normal' etc. in the society at large - creating the kind of misunderstandings that you and I probably have already had.  As articulate adults, we can debate them here and build an understanding of each other (now I have the skills + motivation - I see the point - of trying - because I feel something is achievable), this is far more difficult with an non-communicative teenager like I was, who had all these feelings and not the expressive ability to interact with more powerful others.  I think time, effort, patience all come into it here.  Claire Sainsbury said of Asperger people that 'we are late bloomers' - I think this is right on the expressive level.  This is all linked to a fundamental difference in way of thinking, perceiving sensory information that produces a different outlook + 'phenomenological experience' between those on the spectrum and those who are not (my alternative conceptualisation to Baron-Cohen's 'Theory of Mind' concept!).

    3. You ask how children can possibly see the point in what they learn at school - what the future holds, one cannot see etc. - yet the info we learn in the present is not totally alien, but a product of the social world we already live in.  Learning needs to be embedded in what is already known (or challenge it gently), otherwise it will be 'gobblediegook'.  This is actually fairly easy as a Sociology teacher (much harder I expect for my old French teachers!).  For instance if one is teaching the concept of 'social inequality', it is quite easy to demonstrate to many a late teenager and show the 'point' of discussing such issues.  Say a child has an interest in aeroplanes (as I once did), a Maths teacher could use the statistics of the favourite planes to teach concepts, History could be linked to aviation history etc. (this is much easier 1-2-1 instead of classrooms of thirty though!).

    I like Personal Construct Theory (George Kelly) and how it has been used in application to educational settings (Phillapa Salmon) - this suggests that we all construct our own personal perspectives and that learning of any sort poses a potential threat to these constructs and even sense of identity (see Paul Willis).  Salmon uses a technique of plotting out the objectives to be met and then looks at how the teacher constructs the steps to get there and how the child constructs the same process.  She did this with a CDT class and found that the children thought they were being judged on completely different criteria than the teacher thought (product vs. process) - the teacher was blissfully unaware of the problem, yet this research lead to a class discussion and probably clearer instructions and a more mutually agreed upon transaction on how to reach goals (+ make them shared ones).  This is all very difficult when there are communication breakdowns though.

    You talk of 'skills that need to be learnt' - we may draw up a very different list of what is 'needed' (as PCT above suggests).  You are right that if everyone did 'exactly what they wanted' there would not be very much respectful transaction going on + society would be anarchistic and probably quite dysfunctional.  Yet deviance, difference and diversity are also 'good things' (see later).

    4. Quite possibly it will cause problems in later life, I was just saying that it is a problem for getting someone like me to do homework!  It does have its advantages though (when utilised well) - we are often described as 'categorisers' / 'pattern thinkers' (Grandin) / 'systemisers' (Baron-Cohen) - this is a problem when home and school are totally separated and one wants them to get their homework done - however, very useful for structuring work (when one does understand what is required), seeing patterns in streams of information, the detail (much more likely to actually find 'a needle in a haystack').

    You say that work that is not ideal is a fact of life and preparation for life - don't worry, we do get more than used to this!  We often work to make things better for us though too!  How much we accept the powers that be in life + get on with it + how much we seek to challenge them is part of what I often see as a difference between NT's and people on the spectrum (yet not always).  As I say we are often pre-disposed to non-conformity (also see later).

    Other points:

    Extra time in exams will help me to destress + be merticulous.  I didn't suggest it, yet it was suggested for me to make the course more accesible to me and for me to be given an equal chance of success with others.  I probably won't use all of the time, yet it is very calming to think that I won't be rushed.  In fact, the separate room bit will probably be much more helpful.  I may get good marks, yet I have been assessed as being at a disadvantage in exam conditions due to my 'condition', so this is what I was offered etc.

    You ask what if there is no element that they find interesting in a topic, should we just leave it?  Probably for the time being - yes.  I had eight years of French lessons so that I could get an F at GCSE - I had to do it because it was compulsory, the more they tried, the more I rejected (complicated + numerous reasons for my utter failure at the subject) - sometimes one needs to know when to give it a rest!  This is an extreme example, yet I hope you see the 'point' here.

    Your proposed life strategy of just doing what your told to do goes against every thought in my head!  I never do anything for this reason!  When others in Nazi Germany were conforming, I'd have been killed for rejecting them (although highly hypothetical)!  Stanley Milgram's experiments (although criticised) show the potential dangers of conformity - interestingly about 20% don't conform to authority 'just because' in the same experiments.  The sociologist Emile Durkheim suggested that society needs a level of deviance in order for dynamism and change - in other words a small amount of deviance is a good thing - we have to put up with a certain level of eccentricity and crime, in order to get positive social change and invention - without which we would all still be living in caves.  Interestingly, Mike Fitzgerald has published a book called 'Genius Genes: how Asperger talents changed the world' - this is not to say that if we were all non-conformists that this would be a beneficial (Durkheim certainly warned against this), yet total conformity leads to totalitarianism - something I would be the opposite of!

    You say that Johnathan finds work that is easy and requires little effort 'interesting' - this could be for a sense of pride + achievement - or he just likes doing those activities intrinsically.  Rejecting difficult things is for many reasons.  Highlighting weaknesses in social skills could make them more apparent to him and his inability to do much about it - yes they will help him - but tread carefully!  I guess it is all about finding the right balance where both of you feel that you are getting somewhere.

    You ask what will be the point of qualifications if one cannot utilise them - yep - this has been a major problem for me!  There are jobs that suite though - researcher, librarian (for quiet ones!), lab technician, music producer, playstation game reviewer and so on.  Culturally, it is easier for boys I think - as Luke Jackson says 'different is cool' - boys have subcultural groups + are expected to have hobbies + allowed to be aloof to a greater extent (geeks, nerds, hippies, muso's, etc.) - I think the pressures to conform for girls can potentially create more difficulties - more of a felt need to fit in, followed by more failure + low self-esteem etc.

    I think total individual responsibility is a fallacy of westernised ideology - actions and social phenomena are transactional/interactional - wanting the system to change is linked to feelings regarding conformity to it + also the feelings often felt by a marginalised minority that dominant 'normal' society rejects (shown by civil rights movements in other areas in the past).

    Mmm...'solutions' to improve lives + future prospects - I see your difficulty here!  Attempting to make a young person fit into a system that they are unable to fit into will only lead to trouble.  Yet, the system is not going to entirely change just for my benefit.  I would say that a fulfilling life for me has had to be separated from a 'success in career' - otherwise I would feel very unfulfilled.  I would like better prospects career wise for me now, yet I am moving in the right direction - this is a transaction between me and others and social structures on a wider level - not easy (and I am 36!).

    In order to improve lives and prospects, we need (in my view) to move beyond the child's behaviour and normalisation to dominant cultural standards + challenge the need for some of those standards + find ways of utilising the unique talents that people with ASCs can bring, as 'outliers', 'mavericks', etc.

    p.s. I play still on my XBOX 360, its not all bad, it helps me with hand-eye coordination and a sense of achievement (am good at picking out detail - very useful when playing computer games) - it can become a bit obsessive, especially in teenage years - I would suggest getting out and about this summer and find outdoor interests - maybe - or using it as a bargaining chip!  As my mum used to say - 'we are all members of the crew, but as long as I pay the bills, I am the captain of the ship' - I never did like 'Bill' very much!

    Keep the debate going - perhaps in smaller chunks though - my head hurts (only joking - don't worry!).  I think debate gets us closer to what we really think - language no matter how articulate ever quite does it, yet we can get closer to an understanding of each other through it.  We need questions in order to clarify (although I doubt either of us will fundamentally change what we think - but that is another story!).

    All the best,



    Damian - Retired Community Champion
  • damo73's picture

    Sorry for the lengthy post - yet my answers will depend in part on the questions asked - yet I will try and be more succinct in future (something I find difficult at the mo) - its all an interaction though!


    Damian - Retired Community Champion


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