Monthly Archives: July 2014

Accommodating each other’s autism.

Accommodating someone’s autism can be difficult when you are sharing a house with them.  But if there is more than one autistic person in a house it can be even more difficult for them to accommodate each other’s autism, for example you could have one person who absolutely hates the smell of a certain food, and another person who will only eat that particular food.  Each person can have a routine that they feel they have to stick to, and these two routines could contradict each other.  Even though the two autistic people may have a good understanding of autism it doesn’t mean it will be any easier for them to accommodate the other person’s autism.  But because autism does tend to run in families situations, where two or more people with autism are sharing a house are quite common.

 The main problem can arise from the fact that while autistic people might be willing to compromise with some things, there will be other things that they simply cannot give in on.  If one sibling has an extreme sensitivity to sound and the other one constantly yells and screams, it is obvious that there is going to be conflict.  Of course in this situation they both need to work at finding some kind of compromise, and they may need help from the parents with this.  It is not fair for the one sibling to run around screaming and shouting – whatever their reasons for doing it are – but on the other hand the sibling with sound sensitivity will learn that their brother or sister will have to scream and shout sometimes, and they will need to try to find ways of coping with that.

.  A lot of people would think that neuro-typicals adjusting their behaviour to accommodate someone with autism is the most difficult thing, but this simply isn’t true.  It is not to say that two autistic people living in a house together can’t have a good relationship – in fact a lot of autistic people end up getting married to someone who also has autism, but this is different from having two people with autism being required to spend a large amount of time in the same house as each other, such as siblings, or parent and child.  There is no reason that two or more people with autism shouldn’t live together, and get on perfectly well for the majority of the time, but it would seem highly improbable that they could do so without having any kind of conflict.  The most important thing for people to do in this situation is to try to think how they would want the other person to treat them – if you want other people to adjust their behaviours to make life easier for you, you have to adjust yours a little bit as well.  If someone is unable to do this or they simply don’t have the understanding of what they need to do, then spending time apart could be very important. This gives everybody a chance to be on their own and to relax, to do what they want, and behave however they need to without having to worry about taking somebody else’s autism in to account.

Something else you could try – and again only if you are able to – is to talk to each other about how you experience autism; what it means for both of you, your similarities and differences.  Try to explain what you need from the other person. If the people with autism struggle to do this then parents, or siblings can help obviously.  There are lots of couples who are both autistic who have very happy relationships, and also some who have children who are autistic as well.  These aren’t relationships devoid of conflict – no relationships are; be it between neuro-typicals, autistics, or neuro-typicals and autistics – but they are relationships where people have a good understanding of each other’s needs, and do their best to accommodate them – that`s the basis for any relationship – be it with a family member, a partner or your children.

As with so many other things in life, autism just takes something that is perfectly normal and makes itthat bit more complicated – complicated, but most definitely not impossible.

 

My name is Paddy-Joe Moran. I am a 19 year old autistic author of two books, and co-founder of autism advice service ASK-PERGERS?If you need any more help or advice about Asperger`s, or simply want to talk about it check out my free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

Also to read more from me go to my blog https://askpergers.wordpress.com/

And have a look at my books (at the time published under pseudonyms, but I did co-write them trust me on that!) http://www.jkp.com/catalogue/book/9781843106227

http://www.jkp.com/catalogue/book/9781849052757

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University help.

I wrote a blog a little while ago about how stressful, and difficult I was finding the process of getting support for my autism, dyspraxia and dyslexia at university.  The process has actually become more difficult as it’s gone on. I mentioned that despite having official diagnoses of Autism, dyslexia, and dyspraxia I still had to go back and be re-tested because these were diagnosed before I was sixteen – despite being life-long conditions.  I went for this assessment recently.   It was supposed to be for approximately an hour and a half, but I ended up being there for nearly two and half hours.  I have to say the entire experience was unpleasant, and above all unnecessary. First of all I resented having to be tested at all, considering I had indisputable proof that I have these conditions.  But rather than sitting down and simply asking me what I needed help with, and then getting on and helping me, it was almost as if I had to go through the whole process of being diagnosed again, simply to get the support I am entitled to.  They said that the tests were to see if I still had dyslexia and dyspraxia, or if I had a specific learning disability. I have to say this confused me because I always thought dyslexia and dyspraxia were specific learning disabilities. But to tell the truth, it wasn’t even the pointlessness of the situation that annoyed me the most, it was two other things: the first one being the embarrassment factor – the fact is tests like this are designed so that you`ll fail them, and they keep going until you do fail. So this in itself, by its very nature, is embarrassing – a complete stranger testing you on stuff until you finally fail.   But for me, I simply felt that the entire thing made me look much less intelligent than I actually am.  I was first published when I was twelve, and currently write for three on-line newspapers as well as this blog. I know my handwriting and spelling are poor, and this is one of the first things I told them, but the results of the test seemed to imply that I couldn’t read out loud, have a poor grasp of language, and I was told I need to read a lot more – when in fact I have been reading fluently since I was three, and always have at least two or three books on the go. In fact I`ve read more than anyone I know of my age. I’ve also been writing in one form or another – even if it is simply dictating the words – virtually every day since the age of eleven. Which leads me on to my second point; this was a test for dyslexia and dyspraxia, but I don’t feel my autism was taken in to account in any way, shape or form.   I was somewhere I`d never been before, with somebody I`d never met.  I wasn’t told what order the tests would be taking place in, or even specifically which tests would be happening.  As I said the test took an hour longer than I was told it would take, so I was unprepared for this. By the time we started to get to the halfway point – due to my autism – I was finding it incredibly hard to concentrate on what was going on. Therefore, things that I would have ordinarily found simple, such as reading certain words, proved impossible, simply because I couldn’t focus on what I was supposed to be doing.  This got worse as the test went on, to the point where I could barely even attempt some of the tasks that were supposed to be measuring my dyslexia, because of how bad the symptoms of my autism had become.  I don’t know how these kind of tests are for other people, or what others might have gone through to get help at university, but overall I am disappointed with the process so far. It reminds me much more of school – where you have to fight for even the most basic assistance – than college, where help was given freely to me. Also, making somebody pay to be retested for something they`ve lived with their whole life is ridiculous; if I go up to somebody and say that I have dyslexia, and I have a certificate from the Dyslexia Association confirming this, and I’ve had help and support for it from professionals as recently as last year in college, why should I then have to pay, and go through the process of a stressful reassessment simply so that they are happy with what I am saying to them?   If I have proof of something, and they don’t believe it, surely it’s up to them to come to me, and prove that I am wrong rather than me having to prove that I’m right.  I fully understand the concept of having to check what somebody`s specific needs are to give them the correct help, but it is a pity that people who work at such a high level don’t seem to understand that the best way to find out what somebody with a disability needs is to go ahead and ask them, and then to provide it.  Accommodating my needs is their job. Why should I have to jump through hoops before they will start doing it? I`m sure a lot of other people with conditions such as autism would feel the same way if they were in the position I`m in.  And this is what irritates me the most,  the fact that it has taken such a ridiculously long time – we had appointments so that we could talk about a form that they would send to me to fill out, and send back to them so they could send it to somebody else, so that I could meet with them and do a test, the results of which would be sent to somebody else who I would then meet with, so that they could tell me who I could meet with to actually answer the questions I`d asked in my very first meeting – when really, in my view what should have happened is I should have gone along to one meeting with the evidence I already have of my conditions, they should have told me what support they could offer, and listened to what I was saying I needed. We would have decided on mutually agreeable terms, drawn up a small programme which they then would have put in to place, and that would have been the end of the matter.  As it is, I`m just under two months away from starting university, and am still no nearer knowing if they will accept my diagnoses of autism, dyslexia and dyspraxia, than I was when I began this process five months ago.   I am not singling out any particular individuals for criticism, it’s just the way the system is set up in general.  It`s as if somebody sat down and said ‘how can we make the process of somebody with a disability getting to university as long and time consuming as possible?`  Overall, it has all been a bit of a shambles.

My name is Paddy-Joe Moran. I am a 19 year old autistic author of two books, and co-founder of autism advice service ASK-PERGERS?If you need any more help or advice about Asperger`s, or simply want to talk about it check out my free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

Also to read more from me go to my blog https://askpergers.wordpress.com/

And have a look at my books (at the time published under pseudonyms, but I did co-write them trust me on that!)   http://www.jkp.com/catalogue/book/9781843106227

http://www.jkp.com/catalogue/book/9781849052757

 

 

Autism and music

In lots of people`s minds music and autism are linked. Many people have the image of the autistic savant in their head; someone who is completely incapable of doing anything else in life but sits down at a piano for the first time, and plays it as if they`ve had thirty years of training. And while this may be the case for a handful of people with autism, it`s not something that is particularly common, and neither is it the subject of this blog.
For me listening to music has always been a strange experience. Mostly songs will trigger off thoughts in my head. I would do what I call imaginings – basically choreographing and scripting an entire animated film in my head (https://askpergers.wordpress.com/2014/01/09/imaginings/ ).
. Hearing music would often trigger off certain things in the stories or make it easier to focus, and be creative. For the most part this is how I determine whether I like songs or not – how much they trigger off that creativity in my head. Even nowadays, whenever I write articles, blogs or books, I have to have music on in the back ground. It is not that I can’t work with no back ground music, it is just that given the option I definitely prefer to have something to listen to because I find it makes me vastly more creative. Another thing I would always do, which I don’t do as much now, is create montages in my head, either from books – I have always been able to visualise every character and setting of every book I’ve ever read in vivid detail – or with the characters created in my imaginings. These would play out just like the montages you see in films – flashes of action and characters set to a song. The music didn’t even have to have anything to do with what I was imagining about – the song would just start, and I would begin to think of the characters. Often songs for me are forever linked with certain books or films, even if they technically have nothing to do with each other. This might be because I was reading the book while listening to a certain CD over and over again, or simply because I feel that the atmosphere of the song is similar to the atmosphere of the book. An example of this would include the book of `Let the Right One In` being linked to the album `Distant Relatives` by Damian Marley
I also don’t tend to sing along or hum to music. It`s never been something I`ve had the urge to do. Partly I guess this is because I’d much rather listen to somebody who can sing than drown the song out with my own voice. I know there are some autistic people who will memorise the words to whole films, and repeat them, and this is known as echolalia – but is that really any different from neuro-typical people memorising the words to entire songs? How many songs could you recite word for word? I imagine most people know at least a couple of hundred. It is really just the same thing – just a slightly shorter format.
I don’t know how music features in other autistic people’s lives, or if anybody reading this does anything similar to what I do. But I`m sure somebody, somewhere must.
If you need any more help or advice about Asperger`s, or simply want to talk about it check out our free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl
And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!) http://www.jkp.com/catalogue/author/1762

Male and female autism.

Ever since it was first discovered autism has always been more prevalent in men than women – or at least that`s what everybody believed until recently. But now it`s fairly common knowledge that autism simply presents differently in many women than it does in most men. Although the core elements around feelings and social skills are still the same, a lot of the outward signs will be different. For some reason, women also seem to be better at hiding their autism, and fitting in with the neuro-typical people around them – although this can take a huge toll on their mental health. Nowadays people talk about both the male criteria, and the female criteria. In itself this is a very positive thing as it will lead to a lot more women being diagnosed, and being able to access help, and improve their own quality of life. It also helps people to understand autism a lot more as it takes away the mystery of why it seemingly affects so many men, and so few women. The only problem I have with it is the terminology itself – male and female profiles. While there is no denying the majority of men present a certain way, and the majority of women in another way, this isn’t true of everybody. I know a lot of males who fit with what would be considered the female profile of autism, and there are women who fit the male profile. Even though most people in the autistic community probably know this, I do worry that some people may still remain undiagnosed because doctors, and professionals might simply be checking off things on the female profile, for example, and the individual might be a female who fits the typically male diagnostic profile – it is always important to remember how little the people who refer individuals for diagnosis actually know about autism – and I worry that giving them such a black and white criteria as a male and female profile will lead to trouble in the long-run. While it is important to make people aware of the different presentations of people on the spectrum, I think using more gender- neutral terminology might be better. Of course things like type 1 and type 2 have negative connotations – and they are the same terms used for diabetes, and other conditions – but perhaps they could just be called profile 1 and profile 2? It might not be that big a deal, I just worry that terminology sounding so gender- specific will alienate smaller groups of people, both male and female, who fall in to the opposite sexes profile.
One issue that occurs to me from a male point of view is that most men diagnosed with autism that fitted the female profile probably wouldn’t do anything to act on it. I know it might sound silly, but most men, especially younger men, would probably be annoyed if told they fitted a female profile for autism – whereas if they were told they fitted profile 2, they`d be fine. A lot of women might be annoyed if they were told they had a masculine presentation of autism – it`s not exactly the most flattering thing you could say to somebody.
Also, there is the issue of women who fit what is known as the female profile being so much better at masking their autism, and living seemingly neuro-typical lives, but at great personal cost. But what about men who fit the female profile? How many men could be out there living under the radar – struggling and getting by day to day, putting up a front, and suffering with depression or eating disorders due to the strain? Surely it would be easier for them to recognise what might be going on for them if they didn’t think these traits were exclusive to female autism?
The idea of recognising alternative profiles for autism, and diagnosing people who would have slipped under the radar, is of course a very positive thing, but I feel that a more gender- neutral approach may be best.

If you need any more help or advice about Asperger`s, or simply want to talk about it check out our free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!) http://www.jkp.com/catalogue/author/1762

#justiceforLB

Here is a guest blog, written by my Mum, Jane, in support of #justiceforLB and the #107days campaign:

Hi, I`m Jane. I`ve never written a blog before, but felt compelled to do so when I learned of the tragic (and preventable!) death of Connor Sparrowhawk, otherwise known as LB (Laughing Boy) Connor`s needs were ignored in an ATU, where he should have been receiving care and support. Instead he was left alone in a bath – despite his epilepsy – where he had a seizure and drowned. I wrote this blog weeks ago, but never felt it was good enough to post – I mean how do you do justice to LB and his amazing family, who are fighting for justice for LB, and for the rights of all individuals with a learning disability?
Each day, when I read through Twitter, I am moved to tears by LB, his Mum Sara, and the terrible thing that has happened. It breaks my heart for two reasons; the first one is obvious – a young man died a preventable death. The second slightly more selfish – my own son is around the same age as LB, and he too has autism. And so each morning when I read the Tweets my my heart screams `it could have been my son` – if things had gone differently, if he had needed to go in to an ATU. My son doesn’t have epilepsy, but from what I have learned, from Winterbourne View for example, unsupervised baths are just one among many acts of negligence that can exist in these places.
Above is an example of not just bad, but horrendous practise – LB was let down in the most unimaginable way. But what about good practise? What does that look like? What should that look like? I believe that the person in question should be at the centre of all decisions made: what do they need? What do they want? What do they like? And they should be listened to, and heard. If the individual is unable to articulate their needs then someone should advocate for them – someone who knows the person well, and above all cares for them, and puts their needs and wants at the centre of all decisions that are made. It sounds obvious, and I am stunned and amazed that in 2014 this still isn’t the starting point for all decisions made with/on behalf of people who have a learning disability. This got me thinking about my past experiences in the work place. I am going back quite a long time, and naively I thought things would be better now, but when I read about Connor Sparrowhawk (LB) and Steven Neary, Stephen, and Nico, I realise that in some places things have actually got worse.
I have worked in care homes for the elderly (another neglected section of society), and nursing homes, as a care assistant. I also worked for several years as a Residential Social Worker, with adults with learning disabilities – who had been resettled from long-stay institutions in to their own homes in the community. Most of these individuals had been institutionalised at a young age; many because they had epilepsy, Down`s Syndrome, autism, and various learning disabilities. Some of the women had been put away for `moral deprivation` – because they`d had a child out of wedlock.
I saw lots of good practise during this time; individuals being asked about what they wanted to do, and being supported and enabled to live in the community as independently as possible. And most of the care staff or RSWs were kind and caring people who had genuine feelings for the individuals they were assigned to support. As far as I am aware there was no deliberate cruelty, as there was at Winterbourne View, and no dangerous neglect as there was in LB`s situation, and yet I was often still very distressed, and angry at incidents that I witnessed during my time as a Residential Social Worker. Below are a few examples that brought me in to conflict with other staff members (and also caused me to be bullied in the work place when I spoke up) of when care that was a million times better than that which LB received, was still completely unacceptable
• I arrived at the home of two very intelligent, and capable ladies whom I supported, who had been resettled from a long-stay institution after about thirty years, in to their own home in the community. The ladies were still in bed, and the member of staff who had done the `sleep-in` answered the door. On entering the lounge I noticed straight away that all of the furniture had been rearranged. I said “Oh, have A and D had a change around?” and she replied “Oh no, I was bored last night when they were in bed so I decided to rearrange the furniture.”
I was stunned – yes we had to be there twenty four hours a day to support the ladies to live as independently as possible, but it was their home! I tried to explain this to her by saying “If I spend the night at your house and decide to rearrange your furniture while you sleep, is that ok?” But she just didn’t get it.
Another staff member (her friend) would take money to buy shopping for the ladies closer to her own home because it was cheaper – she didn’t even take the ladies along, or ask them what they wanted! She decided which meals they would have, and took the money to shop for them at the supermarket she used for her own shopping because it was cheaper. She gave no thought whatsoever to the damage this could do to the two ladies, who had worked so hard to develop decision-making, shopping and budgeting skills. We were supposed to be enabling these ladies, not babying them, but these members of staff (although they had genuine affection for the ladies) had very little respect for them as adults. I think they saw these two women as `sweet` and `cute` but in no way as capable, or even as individuals – it was always `A and D` with no room for autonomy. When I spoke up I was targeted by these women, and their friend (who was the senior RSW – my line manager) who constantly tried to undermine me, which was very unprofessional, and could potentially have put the ladies we were supporting at risk.
• I also supported three young women on a different network, who had very severe learning disabilities, and needed far more support that the two ladies I mentioned above. They lived in a house next door to clients who were supported by the same network, but needed much less support. Each morning when I arrived at the house the staff supporting the individuals next door would be sitting around the kitchen table of the young ladies I was supporting, having breakfast, smoking and chatting with the staff I was about to take over from. Several times one of the young ladies walked in to her kitchen, and then left as there was nowhere for her to sit. Again I was ostracised and bullied because I spoke up against this – the staff weren’t deliberately cruel, or even neglectful in an intentional way, they just couldn’t see that this was the young women’s home – not an institution, not a hospital – but a house where actual individuals lived. They treated the young women`s kitchen as a staff room – meeting up with colleagues, and making themselves at home. Again, they just couldn’t see what they were doing wrong when I pointed it out to them. I tried to make them see that they were being disrespectful to the women, but they genuinely couldn’t see what they were doing wrong – their attitude was `we`ve always done it this way` and `who are you to come in and tell us how to do our job? ` Their resistance to any change in practise was frightening!
The above are just a few examples of many incidents I witnessed in an environment that was supposed to be promoting good practise. The individuals with learning disabilities were cared for, and had many of their needs met, but even the staff with the best of intentions towards them still weren’t able to see these individuals as equal to people who don’t have a learning disability. There was no deliberate cruelty, no intentional abuse or ridiculing; none of the things we witnessed at Winterbourne View. Of course the treatment of the people in the examples I gave was a world away from what they had been used to in the long-stay institutions – living on wards miles from anywhere, and having to share clothes, and even false teeth in some cases! And of course the examples I give don’t even begin to compare with the horrific neglect that LB encountered. I am not trying to compare. I am just saying that when it comes to individuals who have a learning disability, what is often thought of as good practise, isn’t good practise at all. It might be an improvement on previous practise, and in some cases it might be a vast improvement, but that doesn’t make it good. Until people with learning disabilities are given the same concern, care, autonomy and rights as people who don’t have a learning disability, then it should never be considered as good practise. People with learning disabilities should not be expected to be grateful because their basic needs are being met; food, shelter etc. They have a right to have all their needs met; to make choices and decisions about their own lives, their own health, their own relationships, their own bodies – even if those around them don’t approve of their choices – they have a right to make their own mistakes
Will we ever see good practise running consistently throughout the care sector? Answers on a postcard please – and preferably one that LB designed, to raise much needed funds for his families legal bills.

You can learn about the individuals named above through the following links on Twitter:
https://twitter.com/JusticeforLB
https://twitter.com/MarkNeary1
https://twitter.com/LSammas1995
https://twitter.com/justicefornico