High Functioning Autism vs Aspergers: The emotions of labels.

I have talked in previous posts about the journey to diagnosis with B.  We had the meeting with the assessment team in the week of his 7th birthday.  My Mum came with me to hear the outcome.  I was really glad she did.

I explained in a previous post we had waited a long time for this meeting and really hoped that we were going to get some answers.

After talking us through a 20 or so page report we were finally presented with the conclusion that B displayed a range of behaviour and symptoms that was consistent with a diagnosis of ‘High functioning Autism’.  Despite the fact that we had spent a long time with the suspicion that B had an autistic spectrum disorder and that we had asked for the referral and the assessment process in order to confirm our suspicions this news came as a shock to me.  I had hoped, and even expected, that they would tell me that B had aspergers syndrome, but I had not expected them to use the word ‘autism’.  I’m so pleased my Mum was with me as she was able to ask the questions that needed to be asked.

‘Why ‘High Functioning Autism’? What’s the difference between that and Asperger’s syndrome?  It wouldn’t have occurred to me to ask such questions.  The Psychiatrist and Psychologist explained that there were many theories and systems used by a range of people in diagnosing and classifying autistic spectrum disorders, but in reality there was very little difference between High Functioning Autism and Asperger’s Syndrome.  So, we asked if there was little difference why had they chosen to use the term ‘High Functioning Autism’ rather than ‘Asperger’s’?  They explained that they felt the difference was really about whether the child seemed to want to communicate with others, but in doing so struggled to make the right social choices about how to engage.  On this basis their observations of B had revealed that he would quite happily have continued to play on his own and would have made no attempt to engage if he had not been prompted.  So they had come to the conclusion of diagnosing High Functioning Autism rather than Asperger’s.

Following this explanation we were able to clarify their understanding of B by explaining that he does want to engage with people, mainly adults, and only when he has got to know them reasonably well and is in familiar surroundings.  We did not feel that he simply didn’t want to engage with the world at all.  We were lucky in the sense that the professionals we were dealing with were very open with us in discussing their reasoning, but I know that this discussion only arose because my Mum had enough knowledge, confidence and just about enough emotional detachment to ask these questions.

As well as discussing the reasons for the wording of the diagnosis by the professionals the discussion also focused on the issue of different connotations of the labels of ‘High Functioning Autism’ and ‘Asperger’s Syndrome’.  My Mum felt that if B was labeled as having ‘High Functioning Autism’ many more negative assumptions would be made about his abilities and potential by schools, leisure providers and other professionals in the future, which may limit the expectations of others and hence his opportunities for development.  I have to say, at this point I really wasn’t thinking of much at all, so I did leave most of the talking and discussion to my Mum.  Thank Goodness she was there.  After some discussion it was agreed by the Doctors that they would change the wording of the diagnosis to ‘Asperger’s syndrome’ rather than ‘High Functioning Autism’.  They accepted there was very little difference and the differences were so blurred that it could be argued that B’s symptoms could be classed as either.  They also quite willingly accepted the view my Mum presented in terms of the use of the language and the different views and judgements that would be likely to be made by the use of the word ‘autism’.

So it was that B was diagnosed with ‘Asperger’s Syndrome’.

Although I had consciously hoped that the end result of all the assessments would be a diagnosis of Asperger’s because I felt it would offer an explanation and that it would then lead to help and support for us and B to manage some of the challenges, I was not prepared for the way I actually felt.

On the way home on the bus it all suddenly hit me.  It was real, written in black and white. I realised it would never go away.  I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour.  I didn’t feel the relief I had expected to feel.  That, in itself, caused feelings of confusion.  I felt sad and upset.  I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.

On top of all those feelings I felt guilty and confused about feeling the way I did.  I want to talk a bit about the guilt.  I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.

As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc.  I believed in the concept of independence being about enabling a person to have choice and control rather than in the literal meaning of being able to do everything for themselves. I believed that people are disabled by the barriers and attitudes that exist within society rather than by the nature of their impairment or health condition.  The kinds of attitudes I really disliked were those that pitied and patronised disabled people.  As a disabled person I did not feel that my life was worth any less than anyone without an impairment and I believed that no matter what impairment someone had their life is not worth less.

So, why did I feel sad?  B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label.  Why did I feel like my world had been turned upside down?  I was still his Mum, I shouldn’t be feeling sorry for him or myself.  Disabled people didn’t want pity.  As a disabled person he deserved rights and respect not pity and sadness.  At that time I did feel sad and because I felt sad I felt guilty.

The second element of my guilt was around the issue of the label.  In the few days after the diagnosis meeting the implications of the discussion about High Functioning Autism vs. Asperger’s Syndrome began to play on my mind.  Why did it mater what the label was?  If I believed that disabled people all had rights then why was it important that we had a lable at all, never mind whether it was autism or aspergers?  Why had I been shocked by the use of the term ‘autism’ in relation to my Son?  I should be challenging professionals, teachers etc. not to make judgements based on labels, not colluding with them by argueing for my Son to have, firstly a label, and secondly a label that would seem more acceptable (aspergers) than another label (high functioning autism).

I found it really difficult to deal with these feelings, I wanted to talk about them, but I didn’t know who to talk to.  D didn’t really understand why I should feel guilty.  He was OK with the plain sad part, but very quickly moved on to the practical ‘well we’ve just got to get on with it and do the best we can’ attitude, which I also agreed with, but couldn’t move forward emotionally.  I may have talked about it a little to my Mum and Dad, but I didn’t feel that they really quite understood how much the two emotions of sadness and guilt were clashing for me.  My friends again were very supportive, and all of them could understand the ‘sad’, but the guilt about needing a label and what the label was and guilt about feeling sad were just alien concepts to most of them.

In the end I had to bury the emotions and try to deal with the practicalities.  We had to deal with the diagnosis and try to find some support and information to help us manage the future for B and for our family.  I also had a job that I was finding very challenging at the time with all sorts of conflicts of its own, so I couldn’t deal with all the extra emotion, so I put it away and moved on.

This brings me to the reason for writing all this down and sharing it.  Hindsight is a wonderful thing and I look back now (4.5 years later) and know that there are things I should have done differently and things that I can share with others who may be in similar situations now experiencing the thoughts and feelings that I had.

I still believe that essentially people, usually parents, but sometimes adults looking for explanations, should not have to seek out a diagnosis and a label to be accepted and to legitimise their needs for support and recognition.  In an ideal world we should accept people for who they are and for what they can achieve and should support people to meet challenges, to make choices and take control based on their needs for support and not on the label given to them.  However, I know that on a practical level services do not work like that.  Society and systems are set up in such a way that resources are rationed and a basic way of rationing is to look at the label.

On a personal level I have stopped feeling guilty that we colluded with this system to get the label for B in order to access services and offer an explanation or even a justification for the way we and B lived.  I have come to accept that we only did what any loving parent would do, i.e. to do the best we could within the rules of the system, to support our Son.

I am now in a position to be able to write about my experience and hopefully to challenge some of the views of professionals about use of language and expectations.  I am now quite open with people that B has Asperger’s, which is an autistic spectrum disorder.  I will explain to people that Asperger’s is a form of autism and that autism is a spectrum disorder.  I will challenge people who make comments about Asperger’s not being ‘as bad as’ Autism.  I am able to do all these things now, which has helped me to stop feeling guilty, but it has taken a long time.

Society has a lot to answer for regarding the use of language, the judgements that are made and the way service rationing and allocation systems are set up.  The last 4.5 years have been a huge challenge for me, but I now have a job that I love and passionately believe in and allows me to go some way towards beginning to challenge these attitudes, but I also believe that in challenging the way society and systems are set up we must be very careful not to make parents and disabled people feel guilty for having to do the best they can to make current flawed systems work.

Thank you all for reading.

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I’m back

Hello world.  It’s been a long time since I wrote here.  So I thought I’d drop you a line to let you know i’m still around and give you a brief update.

So much has happened over the last month.  We had a lovely holiday in Greece, which I will write about when I gather myself together enough.  It is sometimes only when you go on a holiday like that away from all the stresses, strains and distractions of reality that you realise how much you needed the break.  This was definitely the case for me this year, and partly why it has taken me so long to come back here.

Having the break gave me time to think and to consider what really matters and what changes we might be able to make to help B with secondary school, to manage my stress and anxiety levels and to try to balance family and work in a way that works for all of us.

We have been back from our holiday for about 2 weeks and the first week was an absolute whirlwind.  We went to the Paralympics, which was absolutely fantastic and B started his new school.

School has, as predicted, been a huge change and has caused all of us some degree of stress.   B has handled it really well.  He seems quite happy about going to school, but his anxieties are coming out at the end of the day.  He is quite confused about what homework he has and when.  It is causing stress because he wants to come home and shut himself away and escape into his computer games, but I am seen as the big bad wolf because I want him to tell me about school so that I can help him with planning and homework.  I am aslo trying to identify whether or not he can see what is going on.  On the face of it B says it is all fine and he can see everything, but when I look in his books and talk about homework it is clear that he can’t see some of the things and he is still having to handwrite notes, which means that he isn’t going to be able to read them.

I have sent a couple of emails to the school and already had one meeting with the SENCO (Special Needs Co-ordinator).  The responses, so far, seem very positive, so we are very hopeful that the issues will be resolved and that B will be fine, but at the moment it is a full-time job for me to support the process and to remain calm enough and sure enough to deal with the evenings explosions of pent up emotions and stress.

Which brings me to the other big change for the next few months.  I had been so stressed before the summer and was struggling to balance work and all my other commitments.  The stress was meaning that I wasn’t able to be as patient as I would like with the children and was often feeling too overwhelmed myself to support B with his anxieties.  D and I talked about solutions while we were away and decided that for the time being I should stop work.

Part of the reason for not writing the blog for a few weeks was because I needed to discuss this with the Trustees at work.  The details are not clear yet, but I am clear that I cannot work for the next few months.

I will write more about some of these things in the next few weeks as I think these decisions and the negotiations we are having with school are so telling about the struggles that disabled people have.  In our family we have to balance the complexities of our visual impairment as parents, with the needs of the children, ensuring their visual needs are met in school, finding our way through the fog of aspergers syndrome with B and managing my struggles with depression and anxiety.  We do all this whilst trying to work, run a house, negotiate and jump through the hoops of the benefits and special educational needs system and give the children a range of life experiences.  When I write it like this I realise that sometimes its inevitable that the wheels come off and we have to drop one of the balls.  It does make me think when this happens, of the number of families who are dealing with different, but equally demanding issues and the judgements that some people make about scroungers and lay-abouts.  If you had to drop one of the above balls would it be your job or the decision to support your child in their education?

I hope to get back to some more regular blogging soon, but am also trying to have some time for me in order to keep the strength to support B.

Keep your fingures crossed and wish us luck :)

Thanks for reading

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Holiday Wish List

So, we go off to Skiathos tomorrow.  We’ve been doing a bit of planning and preparation for the trip. We have to plan.  Yeah – OK, I’m a bit of a control freak and I like to know what there is to know and what to expect.  It also helps B to know the options for trips etc that are available.  We also use our planning to discuss everyone’s ‘wish list’ so that we can try to ensure that everyone gets to do at least some of the things they want to do on holiday.

Talking about this in advance helps us to manage expectations and to talk with the children about making sure that we all have a nice time and acomodate each other.

So here are our wish-lists for our holiday in Skiathos:

Swimming in the sea – photo from google images

M – 9 year-old

Eat
Read books
Swim in the pool and in the sea
Play
Have fun
Hire a boat
Be in Charge
Rowing
Go on a Pedalo
Go to an empty beach

Skiathos motor boat (image from Skiathos Marine Services website)

B – 11 year-old

Go to Mystique Beach because there are rocks to explore
Go to sunset beach
Hire a motor boat
Go to Arkos Island on the boat
Go to Skiathos town and a get a small boat over to Tsougaria Island
Get a small boat to Lalaria to see the rocks and the white pebles

Me Drink a cocktail whilst watching the sun set.
Go to Skiathos town for dinner one evening.
Eat Baklava, lamb, aubergines, humous, greek salad, stuffed peppers and lots of fish – (not all at the same time)
survive the inevitable motor boat trip
To laze in the shallows of the cool waters, staring up at a clear blue sky and dream
To do the things the children want to do – with the exeception of M being in charge – although if things go well we do let them have an evening each where they choose where we eat.

beach at Tsougaria island

D Well, I haven’t asked him yet and if I do he will probably just ask what the rest of us want to do and say – ‘that’s fine’, which is OK on one one level, but on another its so infuriating, because we just want to know what his opinion is rather than wondering if he is really happy or just trying to please all of us. Anyway, I do know that he will like the idea of hiring a boat.  He will also prefer to be by the sea rather than by a pool.  He will want chilled beer in glasses straight out of the freezer and he will want to eat dinner at restaurants where he can hear the sound of the sea as often as he can.

Ok – I was mainly right – I just asked him – He wants to hire the boat, go to Skiathos Town, Go to quiet beaches and Go to another island.

So, these lists are looking good, as on paper, it looks as though we all want similar things, so hopefully there shouldn’t be too many problems / fallings out / difficult negotiations etc.  We just have to keep our fingers crossed that the children don’t decide to make too much of a fuss about walking to the various beaches and eating establishments and that we don’t end up cast adrift in the middle of the mediterranean in a tiny 25 hp motorboat. So, with that I will climb the stairs, turf the cat out of the suitcase and resume packing our swim stuff, sun screen and towels. See you all in a couple of weeks.

PS – Don’t forget to watch the Paralympics opening ceremony – I think one of my mates is performing – but shssssssh – don’t tell !!

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Emotions – The Gallery

When I think of emotions and pictures I guess I don’t so much think of a picture of the emotion, but rather of the emotions that are remembered and felt when looking at pictures.

The pictures I have chosen can not be considered to be great photographic art, in fact they were all taken using my phone and a couple whilst giggling a lot, so they are quite blurred, but to me they tell a story of last summer’s holiday and highlight many of the emotions that holiday involved.

Last summer we went on an amazing trip to visit my husband’s twin brother and his family who live near Seattle on the west coast of America.

In the days and weeks leading up to the trip there was excitement at the prospect of travelling to america and seeing the children’s cousins and visiting their home, the thoughts of seeing lots of new places.

There was anticipation, nerves and anxiety about how the children would manage a long flight (9.5 hours) coupled with an 8 hour time difference.  I was anxious about how my Son with aspergers would cope with all these changes and with the fact that we were going to be travelling around to lots of different and unfamiliar places.  We weren’t staying in our own house, so would not be in control of all the plans.

There was boredom and frustration on the flight, relief at arriving.  There was joy at seeing their cousins, excitement arriving at the house, exploring the garden, sitting in the hot-tub, and friendship as the girls chatted and brushed hair as though they saw each other every week.

Then there was total exhaustion on the first night as the emotions finally overwhelmed someone:

Asleep complete with DS and stylus sill in her hand

We had an action packed 2 and a half weeks, mainly of excitement, the thrill of flying in a Sea Plane over Victoria Harbour on Vancouver Island. wonder at seeing whales diving in the ocean, boredom on a couple of long car journeys, relief as B seemed to take it all his stride.  Horror and awe at learning the story of the eruption of Mount St Helens in 1980.  Fun of spending time together, frustration when we discovered we were camping for 2 nights in a ‘dry’ county and the beer cooler was empty!

And finally love, in a brother / man kind of way – not that they would admit it – but the laughs we had, the nights out and the nights in sitting on the deck drinking beer or round a camp-fire on the edge of a lake with Mount St Helens in the background.

Mount St Helens and Silver Lake

Brothers on our last night out of the holiday

And then it was time to go  home.  Again, sadness that the children would all be another couple of years older before they see each other again, mixed with relief that everything had gone well and that we had all those happy memories and that the holiday had been such an amazing success and fantastic experience.

This post is linked to week 110 of The Gallery.  To find out more visit Sticky Fingers blog.

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#silentsunday

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Sport – The Gallery

When I saw the theme for the Gallery this week is sport my first thought was to post the pictures I took at the Olympic Cycling Time Trials last week, but then I decided I would leave the Olympics to others and I would post these pictures of my husband running

The Winners – Time 19.58.67

Senior Men’s trophy winner

My OH has no sight at all, but it doesn’t stop him doing anything.  I met him 17 years ago on a sailing holiday, we got on so well because we both enjoyed ski-ing and cycling and went on many different activity holidays together before the children were born.

D is an awesome ski-er.  He is fearless and can ski black runs!

He did his first 10K run about 5 years ago and since then he’s been hooked.  He runs regularly at our local 5k park-run and is running his 3rd half marathon in October.

The pictures above were taken at the Metro Athletic Championships in June.  I have written a post about that event here.

He ran a personal best time for 5000m and was over the moon to run it in under 20 minutes.  Not only did he win the race, but he was awarded the trophy for Senior Men for achieving the time.

Sport is something that everyone can take part in if they have the right opportunities.  Never under-estimate what you or someone else may be able to do.

Go over to Sticky fingers and check out some of the other entries to The Gallery.

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Greece

I’m linking this post to Suzanne at 3childrenandit’s linky “we’re all going on a summer holiday”.

Skiathos Town – photo credit – google images

So, we are off to Greece in a couple of weeks.  Holidays are a strange thing.  We spend lots of money on them.  The idea is to ‘get away from it all’ for a couple of weeks.  To do something different, to relax, have fun, break the routine.  Depending on choice this escape could involve sightseeing, a bit of activity, touring or simply lazing about on a beach doing as little as possible.

I have to admit, that I love the idea of holidays, I tend to over-romantisise them.  I think it is part of my desire to do everything perfectly and the result is often that I get so stressed in the run up to the trip that I wish I wasn’t going and / or that I come home feeling very let down, disappointed and feeling like I’ve failed myself and my family.

So why do it?  Why spend a heap of money and have all that stress in order to end up wishing I hadn’t?  Well, to be fair, it doesn’t always end like that.  There are many holidays where the stress has actually been worth it, and we’ve had a lovely time.  The children like going away.  We have got some lovely memories.  The children have seen different coutries and different places, experienced different food, which is all about them learning and developing.  My Son with aspergers does find going away quite difficult, but he still wants to do it.  He wants to see different places, he likes to know about the different currency and  as long as he is OK about doing it, we think it is a good way of learning how to cope with changes in routine and environments.

beach

We chose to go to Greece this summer because we have wanted to take the children for a long time, but had never got around to it until now.   Greece holds lots of memories for D and I.  It was my first family holiday abroad when I was 16.  It was where D and I met and it was the last holiday D and I went on before B was born and we haven’t been back since.  We have talked to the children about it and shown them pictures.  Last summer their cousins went to Skiathos and came back saying what a lovely time they’d had and showed off their beautiful photographs, so we talked to the children about it and decided we would give it a go this summer.

We chose the last 2 weeks of the summer holiday very specifically.  Partly it is actually quite a bit cheaper to go in those 2 weeks than earlier in the summer.  But, also we have been away at this time before and it has worked quite well.  It gives us something to look forward to during the holiday and it gives my Son plenty of time to unwind and relax after finishing school.  This year there was an added reason.  In addition to all of this we felt that having our trip to Greece at the end of the holiday might act as a bit of a distraction for B to give an alternative focus to that of starting High School.

So, In two weeks we are off and part of me wants to sit back and say YAY – I CAN’T WAIT. But, in reality that isn’t happening.  I’m very nervous.  B hasn’t really settled at all this summer.  The nerves about school are kicking in.  We had deliberately chosen to go away at the end of the summer because we thought the holiday might be a bit of a distraction from starting his new school.  But now I’m worrying that the plan might back-fire and it might just make him even more anxious.

beautiful blue sea

beach, rocks and blue sea

When we booked the holiday the children were both keen on the idea having seen the pictures of their cousins on beautiful empty beaches in beautiful clear blue water.  However, now they both seem less keen and are already questioning ‘how far is it to the beach?’ and ‘how hot will it be?’.

One of the things they were particularly keen on when they heard about their cousins’ holiday was the idea of hiring a small motor boat to chug about to isolated beaches and little islands.  This is still one of the things that they are asking about.  However this fills me with utter dread.  Don’t get me wrong – I love the idea of pootling about on clear blue water in a little boat to discover deserted beaches and I really want my children to have this experience because I know they will love it.  My 11yo boy will like nothing better than driving a boat and being in control of where he takes us.  Are you starting to get the picture?

Ok, I can’t see very well, which probably isn’t the best, but I could do it. – I’d drive VERY, VERY slowly.  I wouldn’t go too far from the coast – just far enough to avoid rocks, lilos and swimmers, and I would probably stop at the nearest deserted beach.  I would accept that I could live without an island – I’d just pretend I’d gone to an island.  But I’m afraid my children and Husband will not let this happen.  If we hire a boat I will not be allowed to control the driving, my Son will want to go fast, he will want to steer and decide where we go.  My husband will encourage this and tell me ‘its all fine’.  He will want a go at driving and will expect me and the children to give him directions.  He will want to go just that little bit further. So, all in all, the combination of an 11 year-old boy with aspergers, a dare-devil husband with no sight (he can ski black-runs), a nervous wreck of a Mummy and a 9 year-old drama-queen girl will make an interesting boating excursion.

So there you have it – I’m absolutely petrified of this responsibility yet I know it will happen.  Part of me wants it to happen, because I want us to enjoy the things that others do on holiday.  I am 99% certain we will be just as safe, if not safer, than anyone else who might hire one of these boats and take out a cooler full of lagers or kids who think its great to jump off rocks where the water isn’t deep enough, but I HATE the responsibility and I worry like hell about it.

Rocks and sea

I don’t know how my Son will cope with the heat.  We have all sorts of ideas about things we could do.  Snorkelling, collecting crabs and shells, taking photographs, walking through the pine forests, catching the boat to the local town, but all of this is only possible if we can all share the load and help to carry the lilos, water bottles, towels, beach mats, parasols, cameras, snorkels, sun-screen, books, sun-glasses, hats, beach-ball etc. etc. etc. and, my god, sometimes you would think we were asking the children to climb mount Everest with a 50 KG pack on, by the fuss they make if they are asked to carry a beach mat, towel and some of their ‘toys’.  It is at these points that I wonder why on earth we have done it.

Having said all of this, I guess, deep down I know through the moaning, my worries and the stress of packing, it is nearly always worth it.  We have some lovely memories and it is often the time of the year where I might get a few days where I can let my mind drift for a little while to the sound of the lapping waves and chirruping cicadas and to the smell of herbs.

Island view

empty beach

So, wish me luck and if you’re anywhere in the vicinity of Skiathos at the end of August stay well clear of any of the little chugging motor boats – You never know who might be driving!

I hope you’re all having a lovely holiday.  Why not pop over to Suzanne’s blog and read some other lovely stories or link your own.

Thank you for reading :)

All photos apart from the above badge are courtesy of google images.

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A Day at Marwell Zoo – by my 11 year old

I went to Marwell Zoo with Mummy, her Cousin and her little boy.

We saw lots of animals including; a tiger, a leopard, penguins, cheetahs and giraffe.

I took lots of pictures and then I edited them on my Ipad.  Here are some of my favourites.

Giraffe

Lemur

Tiger

Zebra

meerkat

sleepy leopard

muching giraffe

lizzard – I can’t remember what sort

Green & Black Poisonous Dart Frog

Penguin

cute lemur

Great Grey Owl

Green Tree Snake

Cheetah

giraffe sharing dinner

Thank you for looking at my pictures of a nice day out.  Please leave me a comment to say if you liked them.   :)

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