Tag Archives: child

The A Word – Episode 6

The first season of The A Word came to an end this week, and it’s fair to say it’s been more than a bit controversial with autistic people. If I have chance I would like to do a blog just talking about the show as a whole, and what impact I think it might have on autistic people, and how they are viewed. But for now I just want to address some things that I picked up on while watching episode six.

Joe is overloaded again: At the opening of the pub it’s clear that Joe is finding it hard to cope. The family said that he was enjoying himself, but it looked to me like he was overloaded with all the noise and talking. I think the programme was trying to show this, even though the family did not understand it.

Joe runs away:  No shock there. I mean he walks off, it`s what he does.  But this time because he left from someone else’s house, and not theirs’s it becomes a big deal. It also becomes clear in their hunt for him that they had no clue where he was going in the mornings.  It becomes apparent that he had been going to the lake, but the parents had no clue about that. I understand that him running off, and them not knowing where he is, is a big deal.  Of course it is!  But it’s not that much different from what happens every morning.  It’s just that there is less chance of him bumping in to someone he kind of knows.

Reaction: When they tell the police chief that Joe walks around by himself in the morning he seems shocked, but they also play it off by going on to say that Joe is autistic.  As if that somehow explains away why he is out by himself so much.  As I have said before that’s not OK for any child of that age. I think most police officers would have something to say about it.

Embarrassment: The whole family seem to cringe with embarrassment when they think about telling anyone else that Joe is autistic. It’s something they have avoided at all costs over the run of the show.  Again it’s not an issue I have with the show itself as I can imagine some people would react in this way.  In fact the issue of parents worrying about their kids being labelled as autistic, or odd is a big one. But this is how I see it; people bully, and they make fun not because someone has a condition, but because of how they behave. Joe will get picked on at some point just for being quiet, or liking the music he likes, or how he opens/closes doors before he can go through them. Not being labelled as autistic will have zero impact on that.  Also I think when they try and hide it they make his autism something to be ashamed of. Something that should be hidden away, and not talked about. In fact it’s nothing to be ashamed of, and it’s just a part of who he is. The fact that they even debate it when they know that telling people might help to find him is poor parenting in my view. But again I think it’s a fair reflection of how some people might behave in real life.

Witch hunt: A man with Downs Syndrome is the last person to see Joe before he goes missing. He is questioned quite a lot, the implication being that because he is disabled people are more willing to believe he might be a risk to people. I think it’s fair that he be questioned – I mean anyone should be if they are the last person to see a missing child – but I do think it’s over the top that they took his laptop, and to tell the truth I am not even sure they would be able to do so within hours of Joe going missing. The point that disabled people can become victims of police and community witch hunts is a valid one. Over the years countless disabled people have been forced or tricked in to confessing to crimes they have not committed.  Autistic people often fall foul of this, and that is a point well worth making.  As I say, it might be a bit over the top in the show as it all happens within such a short space of time, but that’s just what happens when you have to tell a story in a one hour show.

They say they don’t want to change him: While they are hunting for Joe his Mum says that she just wants him back.  Just the same as he is now, and will stop trying to change him if she finds him. It seems that they might be learning. They also use Joe’s music to help find him, thereby showing that they understand how to communicate with him on his terms.

Grief:  After Joe has been found he is in bed with his Mum and Dad. The Mum goes to take off his headphones, but the Dad asks if she can leave them on for a bit. Then when he knows Joe can’t hear him he goes on to talk about how he feels grief as there is a boy stuck inside Joe who they could have had as their son. Again I don’t mind the show putting this in as a lot of parents and professionals say it.  But I still have to talk about it, and how wrong it is.  There is no `child you should have had`.  Think of it this way: If a grown man imagined when he was younger that he was going to marry the best looking woman in the world, and he spent a lot of time imagining how his life would pan-out with this made-up women, and all the things he would do with her. He hits thirty, and ends up married to a normal looking woman, and realises that he is never going to be married to the best looking woman in the world, or be able to do all the things he made up in his head.  So after they are married he turns to his wife and says. “I love you, but you need to give me some time to grieve for the wife I should have had.”  Just think about how you would react if someone said that to you. The fact is there never was anyone to grieve for – the parents haven`t lost anyone.  All that happened was life turned out differently than the image they`d had in their heads. That tends to happen. You need time to adjust to that, fine. But it’s not, and never should be, time to grieve for someone who only ever existed in your head.  But like I say I don’t mind the show bringing it up as it is something people would say in real life.

So those a few of my thoughts. What did you think of episode six, and of the show overall?

What do you think? Let me know in the comments.

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The A Word – Episode 5

Once again I am late with my A word blog, but I caught up on episode five today. Below are some of my thoughts on the penultimate episode of the show.

Joe out walking, again!: Yes this is something I say every week, but the more times I see it the more times I feel it is worthy of comment!  A five year old boy should not be walking down a road on his own.  But more importantly than that I feel it’s just bad writing.  Joe`s Mum and Dad are set up to be worried about him. They fear for his safety. They don’t let him take risks. At least for fifty eight minutes of each episode they don’t.  The opening shots just undermine all the writing that was done building them up as characters. They just wake up, and don’t worry about where their five year old son is, and just wait for someone to bring him back. Now no five year old should be allowed to do this, but it is true some vulnerable autistic people do get out of the house and walk off.  And it’s a big issue. People die from doing this; in some cases young autistic people walk off, and are never heard from again. Nothing else Joe does is that bad; it’s as if his parents want to change the things that impact how people might view him, but not the things that might impact on his life. That might be OK, and the show might be set up to be a tragedy where they spend so long trying to change the things that make Joe who he is, and ignoring the huge life-threatening issue that he ends up being hit by a car. But again that’s just bad writing; someone would say something about a five year old walking down the road by themselves – if not anyone else at least the police officer who picked him up.

Maya getting deported: Maya getting deported does two things in the show:  One, it opens up a whole new argument about how to deal with that situation, and what the best thing for Joe is.  And two, it looks like it sets up Joe going missing in the final episode, with no one to find him when he walks off.  It’s clear that Joe likes Maya, and she seems to communicate with him in a way that he understands, through music. She does not try and make him do the things he can’t do, but instead she works with him on the things he can do.  Also introducing your kids, autistic or not, to Motorhead at a young age is just good parenting.

Alison needs to be in control of everything, and can’t be told no: Just look at how episode 5 starts. Her son is brought back to her in a police car.  Her reaction? To have a go at the police officer who brought her son back. She then pushes Joe on to her sister-in-law despite the sister- in-law needing to get to work.  And then later on she tries to bribe a police offer to let Maya stay, and seems genuinely offended when he tells her no. For me this is not good parenting. Good parenting is finding out what your autistic child wants, and doing what you can to help them get it. But not to the point of breaking the law, or manipulating and bullying other members of your family.  Most of what she does seems to be more about her wanting to get her own way.  Just think about the photos. It’s not that Joe at any point seems like he wants to look at them, but cant.  It’s just that she thinks he should be doing it. She is, as has been hinted at in the show, a bully. She seems to be using Joe as a smoke screen to control those around her, and get her own way.  In truth I am not even sure that she realises that’s what she is doing. When the police officer brings her son back – a son who was walking down a road on his own, and was then found by the officer in a car with two men who were not related to him – he also brings her bad news. So instead of thanking him for doing her job, and keeping her son safe, she puts him down and bullies him, making out he is somehow in the wrong.  Then again when she fails to bribe the other officer, she does the same. She is too embarrassed to admit Joe is autistic, and yet she tries to make out as if the police offer is the one in the wrong for not taking a bribe.  Over all it`s not that I think she is badly written, I just think she is written not to be the hero of the story, but to be in a way the villain of the piece.  She is not nice to the rest of her family.  She does not take Joes needs in to account, but instead looks at her own needs, and how to change him to suit them.  She bullies, lies, and manipulates those around her, and hides behind her son`s autism to get away with it.  Good character, bad person.

Overload: It`s clear Joe is overloaded by everything that’s going on.  I think this was dealt with OK in parts, but he seemed to get over his overload quite fast.  Holding his hands over his ears in the school was well acted, and not a wholly untrue representation of what an overload is like.  I have to say that as things like emotional and sensory overload affect everyone in different ways there was nothing hugely wrong about the parts where Joe was overloaded, but I don’t think anyone comes down from an overload that fast.  What do you think?  Did it ring true for you, or not?

They need to talk about change in the right way: So Maya is leaving, and Joe`s Mum wants him to say he understands, and talk about his feelings while looking her in the eyes, and his Dad wants to pretend it’s not happening. Neither of those are good ideas.  It needs to be talked about a lot. Perhaps things need to be written down for Joe; things such as how life around the home will change when Maya leaves. There is no need for him to look in his Mum`s eyes as she does this. It’s OK if he does not talk a lot, or even at all as it`s clear that he is able to understand most of what is said to him. Now if this had happened in the first episode I could understand neither of the parents having a clue how to deal with it, but look at all the reading the Mum has been doing about autism. I am sure some of that would have talked about how big changes can impact on someone with autism, and how they need to be dealt with.  And also about how it’s not OK to force your kids to make eye contact with you!

A normal baby: One part of the show that some people might take issue with is when the Dad says that he wants to have a normal child. Now this is clearly not a nice thing to say, but I can understand why it might be in the show. I am sure there have been a few parents over the years who have said something like that, and later regretted it. Like I say, I have no sympathy for people who feel that way, but I can understand why it is something that would be written in to a show.

Joe missing? So it looks like in the final episode Joe will go off walking by himself, and get lost. What a shock.  Let’s see what happens, but to tell the truth so far it feels like a very lazy, badly written set up.  Which is a shame because I had high hopes for the show at the start.

So over all what do I think?  Well the truth is I don’t know.  I don’t mind the fact that the show is about people who in my view are poor parents, who don’t get autism, as long as it leads to something. People make mistakes, and I understand this, but I feel it is more than that.  I would like the series to end by showing how misguided, and wrong the parent’s view of Joe’s autism is.  Some of the writing has been poor, but overall I don’t think the show is bad. It would be fairer to say it’s getting more and more frustrating each week. What do you think?

What do you think? Let me know in the comments.

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The A Word – Part 3

I`ve finally caught up on The A word so I thought I would share some of my thoughts on episode three. Even though I found some of the things in this episode to be less realistic than in the first two, I am still enjoying the show overall. Below are some of my thoughts, starting off with something everyone on twitter seems to have picked up on.

The speech therapist: I think it’s fair to say that no real life speech therapist would go in to a family`s home and berate the whole family for the way they talk to each other. It is true that the family’s communication is poor, and that might be something a therapist would address in a tactful way at a later date. But no one would sit around a table, and do this in such a confrontational way. And if they did I imagine they would be asked to leave before they got any chance to work one on one with the child. I do understand that it is a drama, and the therapist in the story had her own reasons for being that way with the family. But by doing so she was risking them throwing her out, and therefore depriving the little boy, Joe, of any help she might be able to give him.

Music is a form of communication: Sticking with the theme of the therapist, I was struck by how quickly she dismissed Joe’s music, and how his Dad uses it to communicate with him. It seems to me that Joe talks to his Dad more than anyone else. His Dad knows how to talk to him, and in my view the fact that he uses something Joe loves to do so is no bad thing. It might be a matter of opinion, but for me what a therapist should do is to make the family more able to communicate with the autistic person on their terms – to make sure they are included and give them the chance, and the tools to join in in the best way they can. The Dad seemed to be doing that quite well by using the music as a way of interacting with his autistic son.

Joe being asked questions: With this point I know how I feel, but at the same time I don’t know if that’s just because of my experiences, or if anyone else felt the same way. The way that the speech therapist tried to engage Joe, and get him talking was to make him more of a part of things. By asking him direct questions, and getting him to do things rather than be passive. I know that for me this would not have worked as it would have put me on the spot, and made me even more overloaded and worried. But what about you? As I say, everyone with autism is different, so just because this would not have worked for me does not mean it would not work for anyone. Let me know, does being drawn more in to things, and asked to do something help you? Or like me would you find this overwhelming?

The issues seem to be with the family rather than Joe: Joe seems to be quite happy. He is not having a lot of outbursts, and meltdowns, and overall seems to have a good life. Now that does not mean they should not try and help him so that he is more included in family life, and has some of the tools to deal with life as he gets older. But the rushing around and panicking about Joe`s autism, tossing money at it, and acting like there is a time limit on when they can help Joe is all down to the parents. The situation is not urgent, or even bad, but the Mum at least seems to feel that it is. Again I don’t have an issue with this even though it’s the wrong way for her to think, as it’s the way a lot of parents do think before they know better.

The Mother, Alison, seems to think they can make Joe not autistic: Carrying on from my last point it feels as if Joe’s Mum thinks that Joe can be made to be un-autistic. That one day he will be talking all the time, and running round playing with other kids. The thing is even if he does make friends, and start to talk more he will still be just as autistic. A lot of parents of newly diagnosed children seem to see it this way; as if the autism is something their kid caught, and not a natural part of them. One thing that my Mum says comes to mind – she does, and has always, had a great understanding about autism being a part of who I am, and not something that can, or should, be cured. And when she would devise tips and tricks to help me cope with the negative aspects of my autism she would say “It’s not about making you less autistic, it’s about giving you the skills to cope in a world not set up for autistic people.” Most parents catch on to this at some point, but as, the programme shows it can take them a while!

Joe’s sister treats him with a lot of respect: When the family were sitting around the table Joe`s mum asked him if he wanted to try some acting. He thought about it, and said no. But his Mum told his sister to sign him up for it anyway – not paying any attention to the fact that he had said he did not want to do it. It was clear from his sister`s face that this made her uncomfortable, and she said that she would not do it. Again this felt quite true to life.

Alison has a need to be in control of everything: Going back to Joe’s Mum, she seems to have a need to be in control of everything, and everyone around her. She does not take no for an answer, and often does not think about how what she wants will impact on those around her. It does seem that as long as her ideas are followed, and adhered to then she is happy, even if no one else is. But that being said she does not seem like a bad person, just someone who finds it hard to hand over control, or follow a path set by someone else, even her autistic son.

Joe is still walking out alone: So even though they thought they lost him last time out, they are still cool with him walking around on his own. This is the only bit of the show I can’t quite understand; autistic or not, it’s odd that a family would just let their five year old son put on headphones, so he can’t hear any traffic, and walk off down a road, on the off chance someone he knows will grab him, and bring him back.

So those were some of my thoughts. But what did you think? Let me know in the comments.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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The A word.

(Note: This blog was written a few days ago but I have only been able to post it now.)

I am sure most of you know of the new drama about autism on the BBC. A lot of you have watched it, and have fairly strong views one way or the other. Now it’s always a risk coming out and making a statement about a show after one episode, but I am going to take that risk, and say that I enjoyed the show.  I also had no issue with the way it handled autism. But I hear the complaints so I thought I would write a blog on my thoughts around them.  Keep in mind I don’t know how the show is going to pan-out, and it might all be downhill from here, but so far, after one episode this is what I think of the complaints being levelled at it.

Not true to life for autistic people: This is a pretty big one. I have heard it said by a few people that the show is unrealistic and shows a lightweight version of autism. But as anyone who knows about autism can and will tell you, it presents in many different ways.  Autistic people are not carbon copies of each other.  In fact we are a mix from a wide pool of traits that make up the spectrum.  I might not have been able to see huge amounts of myself in Joe the five year old boy diagnosed with autism in the show, at first, but the more I watched the more I did see my Mum in him.  Lots of people miss out on a diagnosis of autism in their youth as they don’t tick the classic boxes.  People who don’t meltdown much, and turn most of their feelings inwards can end up almost drifting through life unnoticed, as their silence is often taken for compliance, and not distress. There is an idea that this is somehow `Female autism`.  That of course is not true, and males I am sure are just as likely to present this way as females. I liked the fact that the show did not go down the classic young autistic boy route.

Very quick diagnosis: It’s true that no one gets diagnosed as autistic that quickly. The waiting list alone can leave people hanging on for years. But this is where you just have to understand it’s a TV show.  To film a two year wait for an appointment and then a six month wait for the results would hardly make gripping TV.  Plus what it would mean in terms of practicalities for drama and the cast. Call it artistic license.  But saying that the show starts part way through the assessment, and for all we know he might have been on a waiting list for months or years before the start of the show.

Attitudes: The fact that there are negative or fearful attitudes to autism in the show is not in any way a bad thing.  Are some of the family members in the dark about autism?  Yes.  Do they use poor and negative language about it? Yes.  And are they upset and fearful when they find out their son is autistic?  Again yes. But that’s not a bad thing. It’s a true reflection of the way a lot of real life families feel, talk and act.  Yes it is a shame that in 2016 it’s still a realistic reflection of how real people can view autism, but showing us what we know to be true does not make a show bad.  Plus you need to keep in mind that this is not just a show for us. By us I mean autistic people. Lots of the people watching this will not be autistic, and might not know anyone who is. Therefore their views might match the views in the show.  To turn around half an hour in, and ask people to change views they might have held for years just won’t work. If the show goes the way I think it will then the views of the people in the show will change.  Think of it as a helping hand for people who are set in their views about autism, or have little to no understanding of it.

So was there anything bad about it?

So far there is nothing about the show itself that I did not like. But again keep in mind we are only one episode in and my views might have completely changed by this time next week. The one issue I did have was when the doctor said she would never call anyone on the spectrum autistic. I did not get this bit at all as if you are someone with autism, then you are autistic.  I guess some people might like that, but for me it seemed a bit odd. However, many professionals do prefer to use person-first language when describing autistic people as in `person with autism. So it must have been trying to show this. Even though it’s not something I would do, I don’t have any issue with it in the show as it fitted what the professional would have said in real life.

Over all I enjoyed the show and I am keen to see how it progresses. I would like to know what you think though.  Did you enjoy the show, or hate it?  How do you think it handled the subject of autism?  Let me know. I might blog about this again next week to see if I still feel the same, or if my views have changed.

Autism and Sameness.

Everyone knows change, however small, can be hard for autistic people.  But what a lot of people don’t think about when contemplating change is the changes that can take place in one room. This can be something as small as an item not being put back quite right after cleaning. Things that might not even be noticed by someone without autism, but they can have a real impact on autistic people.  I found things such as a lamp being moved from one place to another very hard to deal with when I was younger.

Furniture being rearranged might not sound like a big deal, but to someone with autism it can be. If they are used to the room being a certain way then seeing it all changed around can throw them.  For me I know where my chair is, and what view of the TV I get from it, how easy it is to use my shelves, and things like that.  So just that one small change gives me a whole lot of new things to get used to.

A new piece of furniture being added can have the same impact.  Add to this the fact that it might mean an old piece is thrown out, then you can see why it’s so much for someone with autism to get used to.  It’s not to say they won’t like the new furniture, but it changes the look of the room, and is therefore something they need time to adjust to.

For me – and I am sure a lot of other autistic people – the big one is having my own things moved, and then put back in the wrong place.  But for me the wrong place could just be a few inches to one side. It’s something other people might not even notice, but to me it is a huge thing.  When I was younger I would have meltdowns if my Mum put something of mine back in a slightly different place after cleaning.  Even now I have to admit I would not be too happy about it!

I am older now, and I do find some change easier to deal with, for example changing a room around.  In fact I am always changing things around in my own room.  But I still find it hard to have my belongings touched or moved.  I like to put DVD’S and books on the arm of my chair, and I find it hard when someone else moves them even if it is just to clean. I won’t have a meltdown, but I will get annoyed and tell them not to do it again.

I think most of this stems from having a good eye for detail. I and many other autistic people can pick up on where a book was on the shelf, and the fact that it has now changed places.  We know if our view of the TV is off as someone has not quite put it back right after cleaning behind it.  And being able to notice this can make things hard. There is also the need to control our environment that a lot of autistic people have.  We experience this as we often find ourselves at a loss with the world, and being able to control some part of it – even if it is just a room, or our own belongings in that room – can help. When we see that changed we feel a loss of control.

Change of this kind cannot be avoided; there is no way around that. But there are ways to help.  One is a level of respect from family.  Moving the belongings of someone who is autistic can have a very real impact on them; there are genuine reasons why they have those items where they are, and why they would be upset if someone moved them.  Try talking to the autistic person, or at least give fair warning before you move stuff.  And as always with autism, planning can be key; talking about what is going to change in a room, how and when.  This won’t solve all the issue but it will help.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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Awareness versus Acceptance ( re-post)

As I have been too ill to prepare anything for World Autism Day I am reposting this.

Awareness versus Acceptance

Many people argue about whether awareness or acceptance are what people with autism want from society.  Lots of people will say that an awareness of autism is fine, but people can be aware and still not accepting.  Virtually everybody thinks they know what autism is, but that doesn’t stop people being offensive.  And some people argue that acceptance suggests that it is up to the neuro- typical people to say `Oh, we accept people with autism` as if NTs can decide what types of people are acceptable, as if autistic people have put forward a fairly good case and they`ve been accepted in to the day to day order of things.  My view is somewhere in between:

Awareness

  • Awareness means everybody being aware of what autism is, and having at least a basic knowledge of it.
  • Awareness is a positive thing because it will hopefully lead to greater understanding, easier access to services, and make life easier for autistic people.
  • The vast majority of people are already aware of the existence of autism, even if they don’t fully understand it.
  • Awareness can help improve the lives of people with autism.
  • Awareness can’t solve all of the problems.

Acceptance

  • Acceptance means people who aren’t autistic accepting autistic people and their ways.
  • Acceptance can be very positive as it might make things easier in the work-place or learning environment.
  • The word acceptance does have a tendency to give a lot of power to the people without autism, as it suggests that it is up to them to decide if they want to accept autistic people or not.
  • A lot of people don’t like the phrase `acceptance` for that very reason.
  • Does this mean that acceptance is a bad thing?  No, it doesn’t. But it does mean that it is something that you have to be careful about when approaching.

Taking the positives and negatives from the concepts of awareness and acceptance, I think that there is a good ground to be reached somewhere in the middle.  Most people are aware of autism to some degree – even if it is just through Rainman. Some people are accepting of it without really knowing what it is.  For me the real key is understanding; you can be aware of autism, but not really know what it is.  Often this will lead to pity, people being patronising, or a belief that people with autism are either dangerous, or completely pointless trying to communicate with.  A lot of negative stereo-types pervade the public’s perception of autism; they are accepting yes, but quite often they are not accepting of real autistic people.  They might be aware, but in reality they are not aware of real autism, they are aware of the Medias` portrayal of autism.  That is why understanding is so important: you are aware of autism – good.  You are accepting of autism – good.  But do you understand autism?

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I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran

Inclusion in Mainstream Schools Vs Special Needs Schools

 

Often parents of disabled children will have to make the choice about whether they want their child to go in to, or continue, in mainstream education, or to attend a special needs school.  Some people argue that special needs schools are the best places for children with disabilities as they give them a much better chance of having a full, and complete education.  Others argue that segregating disabled people from the rest of the community during their childhood can not only be detrimental to them, but can also be damaging to those left in mainstream education, because it fosters an image of disabled people being removed from normal society.  Below are some of the possible pros & cons to each argument.

Should children with disabilities attend Special Needs Schools?

Pros:

The most obvious positive is that these schools might be much better equipped to deal with each child’s specific disability. Because they are set up to cater for children who are disabled, or who have learning disability, the staff – by and large – should be experienced and knowledgeable.  In practise it should remove any ignorance from the teaching.  Along the same lines special needs schools may teach things that are more important for disabled students to learn, for example, an academic education is of course still important, but if somebody struggles to go out and be independent or to talk to other people, having specific lessons in this can be just as important, if not more so.

Obviously bullying can still take place in special needs schools, but it happens much less often than in regular mainstream schools.  This can help children to improve with their confidence and self-belief, as well as helping them become more tolerant due to all the people around them having different disabilities and needs.

The school will probably also be more tolerant of certain things such as having time off, or having to have a specific routine that cannot be changed.  This ties in with the first point about experience.  Having somebody who has read about a disability can be useful, but a lot of teachers at special needs schools may have disabled children themselves, or have worked with disabled children for many years. Special needs schools (in principle) provide an environment crafted specifically to meet the needs of disabled students, so how could it be a bad thing?

Cons:

The most obvious con to special needs schools is that it removes disabled children from the mainstream – but this actually has multiple smaller issues attached to it, that can be broken down.  The first of these is that a lot of parents of disabled people, and disabled people themselves, will end up spending years battling to be included in mainstream life, and many see opting out of this at such a young age – possibly before an informed decision can be made by the young person themselves – is laying the groundwork for a lot of difficulties later in life.

There is also the fact that it may deprive disabled children of a lot of experiences they may otherwise have.  Some of these experiences might not be easy, but it could be argued that it is not right to try to shelter disabled children from the realities of the real world that they will have to spend their lives living in.

There is also the issue of how society in general will perceive disabled children if they are separated.  It is hard to argue – especially to children or teenagers – that disabled people are part of the same society as them, when they see them all as being put in one building away from so-called normal society. The argument goes that in order to breed tolerance, and eventually achieve equality, people in the mainstream need to be around disabled people from a young age, so that this becomes the norm; if there is too much separation it will become something strange and unusual.

It is also argued that although special needs schools mean well, they sometimes tend to prepare children with disabilities for a life in which they will need constant care.  They say this means that instead of learning how to get by in the so-called real world, they learn how to live a good life for somebody with a disability – rather than a good life in general.  The main point of this argument is that some say special needs schools define children too much by the fact that they are disabled, and also make that a bigger deal than it would be if they were left in mainstream education.

So what about leaving children with specific, or additional needs in mainstream education?

Pros:

One of the most widely referenced positives of leaving a child with a disability or learning disability in mainstream education is that they will get a better grasp of the real world, and of how to interact with others.  They might not be able to go out and do the things their classmates can do, but they will be around a wider mix of people, and also be able to experience a less sheltered existence.

Another widely held belief is that by not segregating disabled students from their peers it can breed a much more tolerant attitude.  If people experience being around somebody with a disability day to day, then it may just become the norm; other students would be able to get to know disabled students for who they are, rather than just the fact that they are disabled.

Some parents also believe that their children become much more confident after spending time in mainstream education.  They feel that there is a stigma attached to special needs schools, and that by not attaching this to their child they are helping them to become more happy, and confident in their life.

Cons:

A lot of mainstream schools are simply not equipped to deal with people who have disabilities, or learning disabilities.  This can result in these students not receiving the education they deserve.  Also it can lead to teachers behaving irresponsibly, and sometimes even downright cruelly towards students.  There are countless cases of neglect, and unpleasantness by teachers towards their disabled students.

There is also a greater risk of bullying.  The vast majority of people with a disability or special needs who have gone through a mainstream education report being verbally, or physically bullied on more than one occasion.  Obviously special needs schools will have bullying as well, but incidences tend to be lower.

Often the children themselves find mainstream education a challenging, and sometimes tortuous experience.  This could be for a multitude of reasons.  But whatever the reasons happen to be, a large proportion of students who have a disability dread having to go to school, but often when they go to a school that specifically caters for disabled students they find the experience much easier.

Conclusion :

Looking at the arguments for, and against both inclusion in mainstream education and special needs schools, it seems that there may be two correct answers – one is an ideal situation, and one is a situation that makes the best of reality.  Ideally there would be no need to split students with disabilities and learning disabilities from their mainstream peers, so it is easy to understand the people who don’t like special needs schools.  But if you actually take the time to look at the reality of the situation, you can see that students with special needs might just not be able to keep up with the class, or might need a specialist kind of help that mainstream schools simply can’t provide due to budgets, or lack of training – for some people even a general special needs school might not be enough, and they might need to go to something like an autism-specific school.  There is also the issue that not all special needs schools will be idyllic.  Some of them will have lazy teachers, or bad practise.  But that is not a criticism against the institution as a whole.  It would seem that mainstream schools need to do much more to be able to support disabled, and special needs students.  Whether that means more awareness among teachers and students, to more money being allocated on budgets.  Not in every case, but in many the school system does let disabled students down, and this is unacceptable.  But even if there are wholesale changes and improvements in mainstream education, special needs schools will still have a large role to play in catering for the specific needs of disabled students.  The concept may sound like segregation, but in reality it is a segregation that the student themselves will be able to opt in to or out of, and the student can still interact with non-disabled people when they wish to.  So yes, even though it would be different for everybody, it would seem that special needs schools are largely a positive thing, and that they can be incredibly beneficial to disabled students.

My new book can be found here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran

 

[jm1]

Autism and the Puzzle Piece ………..

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The puzzle piece has become synonymous with autism, and with autism awareness over the years.  A lot of people use it, but most likely many of them don’t think about what it means.  I have been thinking about what it means, and what it represents recently, and I have to say that after giving it a lot of thought and consideration, and weighing up many arguments for and against, I am not a fan.  I am not suggesting it is immediately deeply offensive in the way perhaps racist language would be, and I am certainly not saying that people who use it mean to be offensive, or even mean anything negative about autism.  There are many reasons why I dislike it as a symbol, and in this blog I will attempt to explain what they are. This isn’t meant to be calling anybody out, and people should not feel like it is criticising them if they have used the puzzle piece.  It is simply my view, as somebody with autism, which I am putting forward to make people think.

In 1963 the NAS needed a symbol to represent autism because it had only been officially recognised about twenty years earlier, and it wasn’t really known about at all.  They wanted to be certain their symbol wouldn’t be mistaken for anything else.  There are a lot of charities out there, and finding a symbol that catches the public’s imagination, but isn’t too similar to anything else is difficult.  In the end they settled on a puzzle piece, with the image of a crying child in the centre, created by a parent member Gerald Gasson, This has to be seen in the context of the times, when the majority of people with conditions such as autism may have been institutionalised, and there wasn’t a great deal of care, support or understanding for autistic people.  The charity Scope was still known as the Spastic Society, and terms such as Moron, Imbecile and Idiot were still recognised medical diagnoses.  Virtually all the coverage of disability, learning disability, or any difference would have been negative.  So as a collection of parents who had set up what was probably the first autism-specific organisation in the world, they weren’t exactly in the best position to make sure everything was politically correct, and anyway political correctness as we see it today didn’t exist in the sixties.  When talking about why they opted for the puzzle piece and crying child, in the late nineteen eighties, one of the founding members said:

“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

This type of language may have been acceptable in those days, but nowadays the concept of somebody being `handicapped` or `suffering` from autism is outdated –  that part was symbolised by the crying child, so the concept of autistic people not quite fitting in to society was therefore represented by the puzzle piece.  But there are actually still a number of problems with this idea which I will highlight below. The first and most important thing to say is that as with any point I raise in my blogs, it is not just me saying it.  I did plenty of research in to what other autistic people and their families think of the puzzle piece, and these are some of the main concerns that were raised

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  • The first point that many autistic people raise is the way this symbol assumes that we are puzzles, to be decoded in some way, rather than just people.  It is impossible to ever truly understand another person, so in a way we are all puzzles.  It has been said many times that if people would just listen to what autistic people have to say, or read what they write, then understanding autism and the autistic brain would be much easier.  It seems as if you might as well use a puzzle piece to represent people from Japan because you don’t understand Japanese culture, whereas if you simply take some time to talk to, and listen to Japanese people, things will become clear.
  • Another point – this one actually raised by people who are neuro-typical – is that the concept of decoding the puzzle of autism really seems to be more representative of neuro-typical professionals than it is autistic people.  Autistic people simply live their lives – they are not trying to put a puzzle together.  It might seem like a strange distinction, but I actually think it is an important point.  It does feel more like a symbol that would be worn by people who do research in to autism rather than people who actually live with it.
  • Although the puzzle piece is often used either without thinking, or with good intentions, people often misunderstand it, and its meanings.  Part of this may be to do with not understanding its history, and part of it may be because they assume it represents one thing, without actually thinking about it any more deeply.  This may be why so many parents, and even autistic people use the symbol.  And really it does complicate the issue because although in its origins, and with what it represents today, it is a negative symbol, it is used in a positive way by so many people.

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This sometimes makes it difficult to keep in mind what is wrong about it.   The real issue is that it is not obvious at first glance what it`s supposed to represent; people who defend it say that the pieces represent the families and friends of people with autism, the colours can represent diversity, and overall it represents the mechanical and logical workings of an autistic persons mind.  Now personally – and I know I am not alone in this – I don’t think any of this is obvious at first glance.  In a way it kind of makes sense, but it doesn’t really because none of those things actually call for a puzzle piece.  But if you think about it for a while you can kind of make it make sense.  The problems with this is you shouldn’t have to think about it – it should be instantly understandable at first glance.  The fact that it leaves so much room for interpretation is no doubt part of the problem. *

  • The puzzle piece is a fairly child-like symbol, using primary colours and big jigsaw shapes   A lot of autistic people may like bright colours, and appreciate the symbol on this level, but in a way, because it is so simplistic it does give the impression of being aimed at children – which could be seen to be reinforcing the negative stereo-type that only children are affected by autism. And it was actually designed to represent children because at the time the National Autistic Society was called The Society for Autistic Children (until 1982)

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  • The concept that there is a piece missing from people with autism which separates them from the rest of society is incredibly problematic.  It could easily be seen to be implying that there is a template for how people should be – a template of normality that people should strive to reach – and that because autistic people don’t measure up to this template, they are not full, complete human beings.  The truth is that people are different in all kinds of ways.  Autistic people don’t have something missing from them; they might feel things differently or think differently, but this is just who they are, and is not because a piece of them is missing.  And in a way the symbol does give the impression that if this piece can be found, and slotted in to place, autistic people will finally be whole.

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It is also worth noting that although Autism Speaks didn’t create the original puzzle piece, they seem to be the organisation most associated with it nowadays.  The bulk of their time, money and resources are spent on puzzling out autism; trying to find cures, and researching the causes of autism.  I personally don’t support them, but if you do that`s your choice.  I think that for a while the puzzle piece might have changed to represent a more positive image of autism, but now I believe that because of how much this organisation have been using it, and how it has become synonymous with their campaign to cure autism, it has gone back to its original meaning – mainly that autistic people are somehow lacking.  The debate over Autism Speaks is something for another blog, and I know it seems unfair to let them have the monopoly on an image such as the puzzle piece. But I do find it strange when people I know who speak out against Autism Speaks are happy to use the symbol that this same organisation plasters all over everything it ever puts out.

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Now it would be easy to sit here and say stop using the puzzle piece – I don’t like it, and nor do many other autistic people – but that perhaps would be a little unrealistic.  It has become so ingrained within autism awareness, and campaigns for acceptance that it would be difficult for people to stop using it overnight.  In fact there is an entire industry that appears to have grown up around it: clothes, jewellery, tattoos, to name a few, all featuring the puzzle piece.  Yes, if most autistic people are opposed to the puzzle piece then it should be retired, but I wouldn’t expect this to happen overnight – it may ultimately take years. The National Autistic Society dropped the puzzle piece in 2002, probably because they realised people in the autistic community were not fans of it, for all the reasons stated above.  And maybe in time other organisations will drop it as well?  I suppose the question that I am asking is this – if the NAS created the puzzle piece and used it for so many years, but have now ultimately decided that it is not a symbol they want to continue with, why have other organisations picked it up and ran with it?  If they took the NAS lead in using the symbol in the first place perhaps they should also take their lead in moving forward, and finding a new, more positive symbol?

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But perhaps the most important thing you can do when reading this blog is just to think.  If you have not already been doing so then take a moment now to think about the puzzle piece.  How many times have you seen it in literature, on the internet, in videos, on TV and in books?  Think for a second about what it actually means to you.  Not definitions given to you by somebody else, but when you see this image, what do you think?  Some autistic people have said that they like to be described as a puzzle as they find it appropriate for them, but I was actually surprised by the amount of neuro-typical people who when they stopped for a second, and actually thought about how they would feel as grown men and women being described as a puzzle, an enigma, or something to actually be put back together, realised that they would hate it.

This blog isn’t intended to make anybody who has been using the puzzle piece image feel guilty by the way – it`s not a big deal – just have a think about whether you want to continue using it, or whether you want to use something different?  I read a comment on an old Facebook page a while ago that I think perhaps could be useful.  The person in question was saying that when they first saw the puzzle piece it made them think that autistic people were a piece of society that had been ignored for a long time, and that it was society that was incomplete because of its refusal to accept different groups of people, so that instead of being a puzzle themselves, autistic people were just parts of a larger puzzle – that being humanity in general.  If  the puzzle piece isn`t to be retired completely,  may be it is worth thinking about this, and deciding exactly what it is you are trying to say or represent when you do use  the puzzle piece as a symbol of autism – what is your message, and if that message were aimed at you, how would you feel?

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You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.html/ 

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I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran J

Why Autistic People are more likely to be bullied …

 

Anyone can become a victim of bullying, but it does seem that a disproportionate number of autistic people experience bullying at some point in their life.  There are a number of reasons for this, and most of them are to do with the psychology of the person doing the bullying.  There is something about autistic people that makes them appear to be `good victims` in the eyes of a potential bully.  Probably the simplest way to illustrate this point is to list a few of the key issues below so that you can get some idea of what I am talking about.

  • Autistic people tend to stand out from the crowd – one of the fundamental principles of autism is that if you have it you are not like everybody else around you.  This doesn’t have to be a bad thing, and you don’t even have to be completely different from everybody, but the fact is most bullies will pick on somebody who is even slightly different.  This could be somebody who is fatter or thinner, or taller or shorter than average.  If somebody has autism they might communicate differently from those around them, or behave differently.  It might be something as simple as dressing in a particular way, for example, somebody I knew would wear a suit every day.  Or it might be talking in a formal manner in informal situations.  The fact that somebody is looking for a victim means that even the slightest difference will make a person with autism eligible for bullying.
  • Autistic people may not have as big a circle of friends to stand up for them as other people do – what I feel I have to make clear with this point is that I am not talking about everybody here – I am just using what I have been told by a lot of autistic people who have been bullied to make these points – it won’t be true for everybody.  But what some autistic people report is that as they struggle to make friends in school or the workplace, they are singled out within days of arriving somewhere as being that one person who hasn’t made friends yet; therefore if the bully is looking for a victim they won’t be looking for a group, but a mere individual.  This is the beginning of a vicious cycle.  Because they couldn’t make friends quickly enough they became known as that friendless person who gets bullied – and who wants to be friends with that person? Apparently no one, meaning that they are even more likely to experience further bullying.  Of course people should be able to go in to a certain situation and make friend s in their own time and their own way, but unfortunately it seems that a lot of schools and workplaces have social structures almost like prisons; if you are in a group you are much more likely to have people watching out for you, whereas if you are on your own you are much more likely to fall victim to bullying.  It should also be pointed out that people who do have good friends can also be bullied, but the majority of bullies will look for the easiest possible target.
  • A lot of people with autism are not able to read body language or other social cues, so it can be hard for them to read other people`s intentions – this obviously makes them much more vulnerable if somebody is planning to do something to them – perhaps luring them away to somewhere more secluded so they can be beaten up, or manipulating them in to doing something embarrassing, or illegal.  The person doing this might not even be that intelligent or good at disguising what their intentions are, and it may be evident to everybody else in the room – but if it goes completely over the person with autism`s head, then they instantly become a much more inviting target for anybody intending to bully.  People with autism may underestimate the severity of what another person is planning.  It is also possible that they may be manipulated in to thinking that the bully is their friend.  The cues that something is not right when they are being lured in to a certain situation: certain looks, laughs or remarks, may be completely missed.  This allows bullies to be able to manipulate autistic people in a way they couldn’t do with neuro-typical people.
  • Autistic people also tend to take things literally – this connects to the point above in that it makes them easier to manipulate – But what it also does is lend extra power to the words of the bullies – this comes in two ways: if somebody says `I`m going to kill you` most people assume it means they are going to get beaten up.  Now this isn’t pleasant in itself, but if the person with autism genuinely believe what people say to them, and they have to go in to school the next day thinking someone intends to kill them, then the toll that would take on somebody’s physical and mental health must be extreme.  To have the pressure of believing every single threat that is given by a group of bullies would put incredible stress on to an individual.  The person’s family, and their life may be threatened daily.  This might have the added complication of stopping the individual telling somebody about the bullying.  It would also make the experience even scarier for the autistic individual. The other way that taking things literally can make things more difficult is when it comes to on-line bullying; threats and verbal abuse are an unfortunately common part of people’s on-line experience.  But most people know that in reality the people at the other end of it do it for their own pleasure, and probably don’t feel one way or the other about the people they are sending these messages to; if the bully hadn’t come across that particular autistic individual then the messages would be sent to someone else.  I am not trying to say that this makes it easier for the victim, so imagine believing that every random insult thrown up by someone on-line was sent with genuine hate to you personally, then is it any wonder that some people begin to believe these insults and threats, and feel worthless or scared?
  • Sometimes, because autistic people struggle to understand how to fit in socially, they may do anything they feel is necessary to attempt to fit-in with their peers –Unfortunately this makes them incredibly vulnerable to those who simply want to tease them.  In their mind they might be part of a group and they are all having fun together, but in reality they are just the butt of the jokes.  This obviously isn’t the case in all friendships autistic people make, it is just something that can sometimes happen with a bully, or a group of bullies.  Because that desire to fit in can be so strong the autistic person may know that what they are being asked to do is wrong or embarrassing, but they may do it any way rather than go back to being ignored.  Now unfortunately this can happen with any type of social out-cast, whether they are autistic or not.  It is also possible that the autistic person may not know that they are doing something wrong or illegal, and also that they are not trying to fit-in because they want to make friends, but trying to fit-in just to stop the bullying.
  • Autistic people often give a better, more rewarding, reaction when bullied – now bullies like to hurt and manipulate people – this isn’t to say that they will be bad people all their lives, but in that moment they are causing physical and psychological pain to another human being – some do this because they enjoy the power it gives them over someone else, but most do it to see what reaction they can get from another person.  Somebody who is autistic may obviously be provoked to the point of a meltdown –which is just about the biggest reaction a bully can get.  They may wind the person up in subtle ways that will lead to the autistic person having an outburst, and being perceived as the bad-guy themselves.  The reason a lot of bullies, or former bullies give as to why they hurt people to provoke a reaction is that they were bored.  This doesn’t have any weight to it though, as there is really no reason to be bored in today`s society – the internet and mobile phones give us everything we could ever want at our fingertips, and yet some people choose to use this to bully.  People who engage in provoking these kind of reactions do so for their own enjoyment, and unfortunately autistic people often provide the best reactions.
  • Autistic people can struggle to ask for help with a problem because of their communication skills – maybe they physically can’t ask or tell because of an inability to speak? Maybe they are too scared and anxious to make an attempt at telling a teacher, co-worker or parent about what has been going on for them?  Maybe they believe the threats of the bullies, and don’t speak-up for this reason?  Whatever the reason is, autistic people can find themselves suffering in silence at any stage of their life.  People say tell a teacher or a parent, as if that solves everything – that`s fine but if you don’t know how to tell somebody, if you don’t have the confidence to approach somebody, if the idea of going up to someone and starting a conversation like this is almost as scary as being bullied, then what are you to do?  I am not offering solutions here, but perhaps it is better if the parents and teachers try to notice the problem themselves, and look out for it?  It is really important that somebody else knows what is going on and supports the person who is being bullied.

The above are just a few points that occurred to me when I began to think about why autistic people are more likely to be the victims of bullies.  I suppose what I did was put myself in to the shoes of a bully, and ask myself if I wanted to hurt somebody and get away with it, what type of person would I target, and why?  There may be other reasons, and not everybody who is autistic will be a target for bullying during their life.  I hope that the points I made above make some kind of sense to you.  I am sure I didn’t cover them all, and if any others do occur to you please comment below, and let me know what they are.  I also don’t mean to suggest in this article that only autistic people will be bullied, as bullying is a problem that can affect anyone in society.

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Should you grieve for the child you should have had? and what I think about it.

One of the things I have often heard said – that never fails to wind me up – is that when a child with autism is born, professionals will often say `you need to grieve for the child you should have had`.  Ok, there are so many things wrong with that I am not sure where to start.  But first of all let me say – I don’t necessarily blame the parents – I think if you are a professional and you have any kind of understanding of your job, you should know that this not a good thing to say to parents.  Obviously the parents have had an idea of a child in their heads for some time before it was born; what their child will be like, things they will do with the child, and what it will go on to achieve.  And of course it is going to take some time to adjust to the fact that the child isn’t the person they`d imagined in their head. – But here is a little list of why the term `grieving for the child you should have` had is so wrong:

  • The term `grieving` is usually applied to somebody who has died – of course you might say `you need time to adjust to this, read up on it and get yourself used to the idea` but in my mind the idea of grieving for a child is something reserved solely for if it dies.  What this does is put the idea of a diagnosis of autism on a par with the death of a child.
  • Another fact is that grieving for the child you should have had implies that you won’t be able to do any of the things you had hoped to do with thischild.  And that it won’t be able to achieve or fulfil any of the things you had hoped it would.  Basically, the professionals are telling you `your child is autistic.  Abandon any hopes you had for it. `
  • There is no `child you should have had` – you got pregnant, you had a child, that`s it, end of story – it wasn’t like you had a child who died, and then someone snook in and replaced it with a living child who was autistic.  The so-called child that you are grieving for is a collection of thoughts and expectations from your own mind.  You are basically grieving for the idea of the perfect child – a child who never existed.
  • When professionals use the term`grieve for the child you should have had` in my mind they are doing nothing but affirming all of the negative stereo-types and stigmas associated with disabilities.  If the parent doesn’t have any particular knowledge of autism, they are only thinking of the worst- case- scenario, which probably isn’t anything like the reality, and therefore the professionals should be confirming that the child can still lead a happy and normal life.  Whereas when they talk about `grieving`, all they do is increase the negative beliefs that exist around disability.
  • A diagnosis of autism should be turned in to a positive thing as far as I am concerned; now you know what is going on you can make steps to – not curing – but minimizing the negative impact of autism.  It shouldn’t be used as an excuse to make the condition seem worse than it is.  Grieving for the child you should have had basically makes it sound like parents should sit there wishing they`d had a `normal` child.
  • Parents are emotionally vulnerable at this time – they might not be in possession of a lot of facts about autism.  They need to be reassured and have things explained to them.  They probably don’t understand how highly offensive what they are being asked to do is.  In my mind, you are comparing me, and what I have going on, to the death of a child.  You are saying I am not the child my parents should have had, that I cheated them, and that they need time to get their heads around the fact that I`ve been born, rather that the child they were supposed to have.  Apparently my very existence is so offensive that it needs a period of mourning.

 

I can`t speak for everybody with autism when I say this is offensive; I am speaking from my own point of view.  But I can tell you that there are not many things that I find offensive.  Obviously I don’t like things like racism, and I may get upset or angry about it, but that is not the same as being personally offended when somebody insults me – but when people talk about grieving for children they should have had, I do get offended.  But I stress again that I do understand that parents may have no idea how offensive this may be.  Yes it annoys me, but I am not blaming them – they have been given terrible advice and they didn’t know that they shouldn’t take it.  I hope that if you read this blog and you are one of these parents, you won’t be offended, but rather you will take on what I have said, and that you will try to use it to perhaps get a better understanding of why I am so offended by this concept.

 

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