Springingtiger's Autisable

Thinking Person’s Guide to Autism - Review

Fri, 13 Jan 2012 11:05:46 GMT

I sat and read this book over a couple of days and I loved it. The introduction begins, “This is the book we wish we’d been given when autism first became part of our lives…” the editors have put a lot of time and personal effort into sharing the lessons they have had to learn the hard way. Having said that, I’m not suggesting this book will make the experience of bringing up a child with autism easy, but I believe it will make it easier. What do I know about bringing up an autistic child? I have autism, so I actually understand very little of how it feels for a neurotypical person to have an autistic child. There is obviously a difference between looking out of autistic eyes and looking into the eyes of someone with autism, I think things look better from my side of the lens.

This book is aimed primarily at the parents – most often the mothers – of children with autism and is designed to help them throughout the experience of diagnosis and child rearing, but it also contains a lot of good stuff for people with autism and anyone connected with autism. I was fascinated reading the first hand accounts of parents with autistic children, I tend not to be very aware of other people’s feelings so this book is quite an eye opener, I suspect it will help parents of autistic children to know that they are not alone in their feelings and experiences. What will help them more is the practical advice, the lessons learned by others who generously share them here, yes you will have to undergo similar experiences, IEPs etc., but you don’t have to stumble around blindly because others who have gone before you are giving you a guidebook here.

The book is arranged in chapters each containing several fairly short essays, and is well indexed at the rear which makes it easy to locate information. The format makes the information easy to digest because it is in manageable chunks. It also means that any spare five minutes can provide valuable learning, as far as I can gather information that can be garnered in increments of a few minutes at odd times may well suit many autism parents. I think it is also useful that this is a book that can be read in any order, selecting whatever is wanted at the time, I am going to leave it in my sitting room so it can be dipped into in spare moments.

This is not a book “about” autism by “experts” this is a book by people who are actively involved in autism either as parents, family members, or people on the Spectrum. There are a few articles by autism professionals, but they are professionals for whom autism represents more than just a job, and the articles fit in well with the overall ethos of the book – useful information in manageable chunks. The people contributing are sharing of themselves, they share the mistakes they made, and the valuable lessons they have learned. The autistic contributors share something of the experience of being autistic, this in itself should provide a degree of hope for many parents, and help them to understand that the world we live in may not be as terrible as they suppose – it’s not all great, but it’s not all bad either and sometimes it’s pretty good! There is much that is positive in the experiences of the parents in the book and there is a lot of joy besides the heartaches and anxieties, as well as tears there is laughter.

The book contains a list of resources, remember these resources are things that the editors – parents of children with autism – have found of value. You are not being sold anything just provided with tools that have worked for some, are working for some and many of which will cost you nothing. The resources and therapies referenced in the articles may cost – time and money – but this book will help you make the decisions you must and guide you towards the practical and financial support you need, you don’t have to walk this path alone.

This is a book of HOPE. The underlying message is that however tough things may be, however difficult they may get, don’t give up. Things can – and generally, but not always – will get better and there are resources available and people willing to help you give your child the best possible life. I believe this book may be the turning point in the lives of many parents of autistic children, but what do I know? I am an autistic adult and I contributed.

Domino Diagnosis and the Thinking Person’s Guide to Autism

Mon, 09 Jan 2012 05:07:29 GMT

It would appear that, as well as being on the Spectrum, I am also an autism parent. I never suspected my daughter might have an ASD, not even after I received my own diagnosis. It was my wife you suggested it as a possibility and it would explain much about her journey through life. My adult daughter did an online autism test which suggests she is on the Spectrum – http://glennrowe.net/BaronCohen/AutismSpectrumQuotient/AutismSpectrumQuotient.aspx – but as yet she hasn’t decided whether to go for assessment. It appears to be a common phenomenon that the diagnosis of one family member reveals others on the spectrum.

My wife has been adding to our library of autism books – you’d think she’d know better than to feed my obsessions! – and among her selection is Aspergirls by Rudy Simone which seems to suggest that my daughter is an Aspie. I feel about my daughter much as I felt about my own diagnosis, that if only I’d known sooner we could have done something to avoid some of her problems before they arose. For a while I also underwent “autism parent guilt” you know the one, “is it something I did, is there something I could have done? and – in my case – am I to blame for passing on my genes?” I am delighted that our book order also included the quite excellent Thinking Person’s Guide to Autism which I am reading, and it makes it very clear that I am not the only parent to experience guilt. There is a lot of book still to read, but so far it is helping me make sense of my daughter, and myself as well as opening my eyes to aspects of autism I had not already considered. I just love the willingness of so many people to share from their experiences, I don’t know how much it will help me with my daughter, but it’s certainly helping me with me!

Bereavement – Out of Sight, Out of Mind

Mon, 02 Jan 2012 19:11:58 GMT

My wife has been looking back at the bereavements in her life and I have been observing her; it occurs to me that my attitude to bereavement is not only different from hers, but perhaps from humans in general.

Several years ago on AHR (Alt Healing Reiki newsgroup) in response to someone reporting a death, I remarked, “People die”, for me a straight forward statement of inevitability, I could not understand then, and do not understand now why people make such a big deal over death. Unfortunately my response led to me being abused by a number of people who, while accusing me of insensitivity, felt it perfectly acceptable to flame me on the newsgroup.

I cried once when my mother was dying, but not because she was dying; I cried because I was unable to impact the process of death whether by prayer, healing or Reiki and I disliked the sensation of powerlessness. I think the only person who has died that I really miss is my Father-in-law, I am not in any way sad, but I enjoyed his company. When I was much younger I wept when my friend Sadie died, she was several years older than me and had always been kind to me when many weren’t, and I was sad when my whippet cross bitch Curly died.

My one objection to death is that it does tend to cause an interruption to one’s life, worse an interruption during which one is surrounded by people being emotional, that is much more upsetting to me than someone’s death. I definitely dislike it when a death compels major change in my routines, as my Father-in-law’s did. I like a degree of predictable routine and order and bereavement is disruptive, but I do quite enjoy meeting family members whom otherwise I would not see and death provides a reasonably sedate context which discourages excess noise and ebullience. I certainly prefer funerals to weddings, you get to see people without having to put up with loud music and dancing and the food is often just as good.

Generally for me death is a matter of “out of sight, out of mind”. I tend not to think of people when I am not regularly encountering them, whether living or dead. Frequently I have thought I should phone or write to someone only for months, even years to pass, before any action is taken. My problem is that I have little sense of the passage of time, my wife says I have the biggest “Now” of anyone she knows, this tends to mean that I either act immediately or I don’t act, I lack a sense of urgency. Because only the immediate really impacts me the past, the future and the geographically distant make little impression upon me and anyone not immediately present tends to escape my consideration.

I think another reason death has little impact upon me is that it is illogical to be upset by death. Everyone – even Markandeya – must eventually die; if there is a life after death then death is merely a step on a journey, if there is oblivion after death then there is little point in worrying as it will make no difference. Someone who is absent through death is – to me – no different from one who is disconnected from me by geography, they are absent and that’s that. I may or may not meet some again, but it is of no great concern to me. Life happens and there is little point in getting emotional about it, people come and go, they always will, it is enough to get on with what we must and not waste time in fruitless brooding over things that can never be, or longing for things that can never be again.

A Buster Keaton Week.

Sat, 17 Dec 2011 22:12:35 GMT

I just banged my hand again. It’s been one of those weeks, if there was something to walk into, to fall over or upon which to bang any part of my anatomy then that is what has happened. My finger ends are sore from missing that for which I was reaching and instead hitting shelves, unfortunately when I do pick things up I drop them, as often as not. I seem to knock things over as readily as grasp them. Typing is a chore as my fingers are stubbornly refusing to type what I want, forcing me to backspace repeatedly. This week the vertical has been escaping me at inconvenient moments like negotiating doorways, my shoulders have suffered! I have been catching sleeves and pockets on door handles and my poor toes have taken more punishment that they deserve. My coordination is totally shot at the moment.

Everybody’s talking at me, I can’t hear a word they’re saying. If they’d only speak one at a time, if there was no background noise, perhaps things might be easier. I hate sitting in pubs and watching people’s mouths moving without being able to separate their words from the general din. Why do public venues feel obliged to play music and surround customers with television screens?

Excuse my rant, but it’s just been one of those weeks. And now it’s snowing, lots more potential for bumps and bruises, oh goody!

Accommodation should provide information for disabled guests

Sat, 10 Dec 2011 03:45:59 GMT

Hi, folk I have lifted this text in its entirety from Cliff Sull’s blog Please sign the petition and tell all your contacts too! You may also like to check out the Tourism For All website https://www.tourismforall.org.uk/

Thankyou,

e-petition via @brianmseaman – Accommodation should provide information for disabled guests
Posted by cliffsull ⋅ December 9, 2011 ⋅

If you get 2 minutes – please sign this e-petition which is asking the government to take action and ensure that Accommodation should provide information for disabled guests.

CLICK THIS LINK FOR THE E-PETITION – http://epetitions.direct.gov.uk/petitions/20195

You can get more details from Brian on Twitter – @brianmseaman

Curse You Audio Captcha!

Fri, 18 Nov 2011 10:02:23 GMT

I do not as a rule have any major problem with blog sites that use a captcha to ensure that commentators are real people, Autisable doesn’t and as a consequence the comments frequently include totally unrelated marketing material, but yesterday I hit a real captcha problem. I visited one of my favourite blog sites – JeffsLife which is always thought provoking and informative – the post was about the employment prospects of Jeff’s son, Alex, and it moved me to want to comment. I wrote my comment, but when I sought to post it I found the capcha was obscured by an “Ads by Google” box. I could not move the box, it remained in place as I scrolled up and down, clicking on the ads did not cause it to disappear, but the button to substitute an audio capcha was accessible – problem solved.

No it blanketywell wasn’t! Again and again I played audio capchas, and again and again I failed to enter the correct letters. Unfortunately the letters were spoken faster than my ability to process them which was extremely frustrating – I don’t have glossolalia, but, had you heard me, you could have been excused for thinking otherwise! – fortunately when I was reaching boiling point I had the sense to stop trying and instead made my comments directly to Jeff via Linked In. There was a time, particularly when I was younger when such frustration would have led to things being broken, there is much to be said for age that moderates rage. (snappy little sound bite if I were reading this aloud!)

I love the Internet, but I do occasionally have problems with it. I tend not to read in a straight line and websites with lots of distractions make my reading process rather laborious, as a guide I would say that Facebook is too fussy, I’m not even sure that my own site doesn’t need a good tidy!. Pop-ups and animations are a real nuisance, all I really want is a block of clear type on a contrasting background. That’s another pet hate of mine, illegible text, it’s sad that when someone has gone to the trouble to compose a piece they publish it in dark letters on a dark background because I just won’t bother to try and read it.

I do not consider myself disabled, as a rule, but that blasted audio captcha reminded me that I do have some processing challenges. I wish website builders would take into account that not all of us share the same facility of processing. I will continue to visit JeffsLife because of the quality of its content, – it is very legible too, black on yellow.

Website designers and providers please think of those of us with processing problems when you design your sites, we too should have a right to be able to use the Internet!

STOP PRESS: I have discovered a solution to the JeffsLife problem - don't go into an individual posting, but instead go into the main site and scroll to the post upon which you wish to comment.

A Sense of Wonder

Mon, 07 Nov 2011 23:35:44 GMT

I sat down at the PC to watch a program on BBC iPlayer, I was excited, I always am when I watch iPlayer, not because of the content – however good that may be – but just because it’s possible. On my classic iPod I watch films and classic TV shows and this too fills me with a sense of wonder; I love that I can copy a DVD to my PC, onto iTunes and from iTunes onto my iPod. It always fills me with awe that as well as several thousand songs I also have several TV shows and films in my pocket; I love that on my iPod I can listen to an audio book of – for example – Conan Doyle’s The Speckled Band or watch the Jeremy Brett television version, perhaps if I prefer read it on my Sony Reader or pick up the print version of the Complete Sherlock Holmes (Strand facsimile) that sits by my bed and happily flick through real paper pages, so many choices!

I am fortunate that the world never ceases to fill me with wonder and that there is always something new at which to marvel. When I were a child our radios plugged into the wall and their valves illuminated the room, however when I were at school my Grandmother bought me an Hitachi transistor radio that fitted in my pocket and provided me with many happy hours of listening to Radio Luxembourg in the dorm after lights-out. As a young child I loved “Watch With Mother” and our evening “Children’s Hour” now my grandchildren have access to non-stop CBBC – at this point I should state that some Philistine has ruined “Bill and Ben” – and several other dedicated children’s channels, is this a good thing? I don’t know, but it is what’s so! I have been amazed by colour television, by the Sony Walkman and – as I have mentioned – by my iPod. I am still excited by the Internet and that I can access it on a mobile phone. I remember the first mobile I saw when working for BT at the Commonwealth Games in 1986, it was a car phone mounted on what appeared to be a car battery with a shoulder strap and an aerial several feet tall and I dreamt of how wonderful it must be to have one, needless to say I am seriously in awe of modern smart phones! I am excited by storage media and was amazed in turn by the 8inch floppy disk, CDs, DVDs, SD cards, USB sticks. Don’t get me started on digital photography!

It’s not just technology that inspires my sense of wonder I have twice visited the Taj Mahal and was as stunned by it on the second visit as the first; however on one occasion the sight of the full moon hanging in a blue summer sky ,as I climbed the hill towards my home, filled me with as much awe. I have stood on hills and seen views that took my breath away, I have enjoyed sunrises and sunsets, seen dolphins off the Black Isle, so many things and still I am excited by fresh snow on the garden or spring birdsong.

A trip to a furnishing store is always a source of joy as there are so many textures to feel. There is always so much to see on a trip into town, I love watching people, looking in windows, browsing in bookshops. I am always fascinated by the ingenuity of products in Lakeland ,and – needless to say – electrical shops are literally wonderful. My wife complains that shopping with me is like shopping with a child, am I to blame that shops sell sweets, gadgets and toys?

I tend to have a child’s grasp of reality, reading The Princess Bride confused me, it was some time – and only after a web search – that I realised that S. Morganstern was as fictional as Westley and Inigo, I still don’t know where fiction ends and reality begins in some of the pieces outside the story! It also enables me to watch a film over and over again and wonder if it might end differently, it would if the characters could hear me shouting instructions to them!

It is true that occasional bouts of depression can dampen my enthusiasm, but they are infrequent. I may have some physical and psychological challenges. However of this I am certain, all the difficulties I may experience are nothing when compared with being able every day to look at the world and go, “WOW!” Peter Pan is not so much a personality as an aspiration, why should I want to cease to be a child?

I wish I’d known about the food thing!

Sun, 16 Oct 2011 01:08:25 GMT

If there is one thing that really annoys me about not getting my Asperger’s diagnosis until my 50s, it’s all the stuff I had to learn to eat because I didn’t know I was allowed to melt-down and refuse – actually back when I was a child refusal was out of the question and Aspergers was unknown. I have seen myself sitting for ages at school, in tears, as I struggled to consume a bowl of cold and congealing rice pudding. Monday lunches were hell; corned beef and lumpy mashed potato followed by rice pudding. I hated sago and tapioca too, as well as liver. Over the years I have forced my self to eat all sorts of foods I’d rather not – I would just live on bread, biscuits, sausages, sweets and chocolate if it were up to me – I even tried tripe, oh god, never again!

Unfortunately because I have been married so long, I can’t use my Aspergers to prevent my wife making me eat healthy stuff because she knows that I can eat sensibly if supervised. In the supermarket she remarked to me that, shopping with me is like shopping with a child, I have a tendency to buy biscuits, sweets and beer! My wife quite correctly insists on my eating a varied diet which includes sensible menu choices, without her it would be both unhealthy and repetitive. Today she prevented me from taking a tub of chocolate covered, rum soaked sultanas to work as my meal.

I am actually grateful to those who forced me to eat against my wishes because had I been left to my own devices there are so many foods I just would not have tried; even now I can easily slip into a habit of eating the same things if I am not careful. There was a time when I ate virtually nothing but cheese sandwiches and I still frequently return to them, I think because of their comforting familiarity and because they feel right in my mouth. I love spicy food so having an Indian mother-in-law is an absolute joy! The good thing about sandwiches is that they tend not to be too hot; I have a tendency to eat my food straight from the heat and have frequently scalded my mouth and tongue, but I can’t help myself, I have to eat as soon as I am ready .I hate waiting which is a problem if I have gone out for dinner, I am very impatient and hate the delay between choosing from a menu and actually starting to eat. Whatever, I am glad I never had the opportunity to confine my diet to a few comfortable choices, I may have had to eat things I don’t like, but I have discovered and enjoy a whole world of food choices which – if left to myself – I never would have.

How do you feel? – How would I know?

Thu, 15 Sep 2011 20:04:28 GMT

As usual I returned to work too soon, but how can I know if I am ready for a full shift without working one? Anyway I survived a full rotation without mishap so I am earning again, thank goodness! The biggest problem with having been off work is that people will ask the stupid question, “How are you feeling?” which implies a question of process, but expects an answer about the quality of one’s feelings.

If people would ask, “What are you feeling?” I could reply with reasonable exactitude, but I find it impossible to give a qualitative reply, I find it harder still to describe my emotional mood. At the moment, of course, my anti-depressants make any sort analysis of my emotions quite impossible. I find it hard at the best of times to distinguish one emotion from another except for the more obvious ones, I am not even very clear on the definition of pain, I am clear I feel pain differently from other people, I certainly feel it less than many.

When people ask me how I’m feeling I generally reply, “Ok.” or,”Fine.” because I have learned that they don’t want to listen to a list of symptoms, but qualitative replies are purely subjective and largely meaningless. Even were I to understand what I mean by Ok, I doubt whether your definition would be the same, so the interchange is of no real value. Personally, I prefer not to be asked the question because any thought put onto a reply is a waste of effort as people do not really want knowledge, but merely reassurance. I realise that asking “How are you?” or, “How are you feeling?”, is a standard formulaic courtesy and most people expect to be asked as part of the meaningless rituals of social interaction, but personally I’d rather people only asked if they were interested.

A Return to Blogging

Sun, 11 Sep 2011 21:08:09 GMT

It is quite some time since I wrote any of my blogs, but I suppose Depression will do that to you. The unreliability of O2′s Broadband service has not helped one little bit, it may even have contributed to the downwards spiral, but – in truth – I just couldn’t be bothered. Yes, the desire to write was nagging at me, but it was not strong enough to override the inertia, which would rather I spent my time in bed, hiding from the world.

I have been treated for Depression in the past, however for many years my temperamental set-point has been so high that even a down-swing perturbed me not. This latest depression is not new, it has been building gradually over the last two or three years. I had to give up my part-time massage work, which was my major social contact outside my main employment, because after several bouts of ill-health it became too much for me physically. The economic downturn has largely caused a drought of contracts in the public sector and those that are available tend to go to larger consultancies with economies of scale, this has directly impacted our income. As my set-point has been gradually sinking I have also been re-evaluating my life in the light of my Asperger diagnosis, which really could not have come at a more unsettling time. I have never handled change and uncertainty well and learning the reason was, itself, unsettling. The downwards spiral, once started, has propelled me downwards with increasing velocity until the separation of my daughter from her husband tipped me over the edge.

My wife got me an emergency appointment with my doctor who prescribed me an anti-depressant and signed me off work for a couple of weeks while the medicine kicked in and I got used to the side effects. Great, now I had the additional worry of being off work at a time when we really can’t afford to have staff away. Fortunately after a couple of weeks of the tablets – I call them, “Space Capsules” because they tend to put me out of Earth orbit for a while – I seem to have given up caring about anything much. I can now function again, but I don’t feel; I have no misery, but I have no passion, no joy, and I am aware of the pit beneath my feet as though I were looking down on it from one of those glass walkways found at some tourist venues.

At last I have managed to write again, which is positive. When I am deprived of writing, I am deprived of thought, or rather I am unable to clarify my thoughts when I am unable to read them back. Now I am writing again, I am no longer powerless; the facility to clarify my thoughts gives me the power to take deliberate action to free myself from the darkness. I am returning to work and I will start clearing up my neglected garden before the winter sets in. I may not yet feel any better, but I know that being able to act and set goals means that the crisis is past, from here things can only get better…until the next time.