See previous thgread on dating the physically handicapped and my post dated 26/1/05

It would be great for me( just out of interest) to get some reaction and see whether people understand anything about the difficulties that people with autisnm and Aspergers face in society in general.

I appreciate your comments

Hi. My sister works with children with austic and extreme challenging behaviour, so I would say that I have a pretty good understanding of autism :) The biggest problem my sister faces is the public reaction when she takes her students out shopping etc. - a number of people misunderstand the students behaviour to be just that of a child 'being naughty' rather than a mental health issue and my sister gets a number of comments to take effect. She now carries information cards now stating who she is and the school she works for, to give to people who comment or witness very bad behaviour on the part on the students.

How does your sister handing out apollogy cards give you a good understanding of Autism?
I fail to see a link.... :confused:

I didn't say that. I said my sister works with austic children, hence I have a good understanding of austism - i.e. she talks to me about her work and therefore I know more about the subject than I would if she didn't work there.

I used the example of people not understanding challenging behaviour just to illustrate a point made in the post on disabilities - joe public is less likely to understand a disability that can't be seen. I didn't say that the act of my sister explaining her work to other people through the use of cards helped me understand it more. But, it is very early still, and that paragraph don't read well so I can see where I have confused you :) Incidentally, the cards my sister hands out are not 'apologies' - they simply state the fact that she works with the austic spectrum, and that her charges attend a school for autism and extreme challenging behaviour.

I spent a few years working with adults with Autism.

I have worked with children and adults with autism for about five years, both in schools and more recently have worked on intensive behavioural programmes for children with autism (Applied Behaviour Analysis).

I'd say that on the whole people's level of understanding about the disorder is improving but I do still encounter the odd few ignorant people. The most ridiculous stories I have heard include people thinking autism is "catching" and that children with autism are just "naughty". Anybody who has worked with children on the spectrum can tell the difference and unfortunately these sort of comments are just about ignorance. Also people seem to think children with autism are all super-intelligent (probably because of the film Rainman). In my experience this is incredibily frustrating for families and even those families with very high functioning austistic children can experience many problems with the simplest things, such as sleeping, eating etc.

At the end of the day it's all about teaching people why these people may behave differently and encouraging tolerence.

My, admittedly limited, understanding of the Autism Spectrum is that it mostly manifests itself in boys and men.

At one end of the spectrum is the 'classic' autistic child - often alone and disoriented in a world that doesn't compute.

At the other end, I believe, are a lot of obsessive collectors, and the like. My cousin has aspergers, and when we talk about it, it doesn't sound like I am too far off it myself - in the ways I think about my relationships with other people particularly.

I would say (again without the benefit of in depth knowledge) that Aspergers, and Autism are expressions of the same thing that manifests itself in many men - a desire to control and understand the environment through categorisation or organisation, a limited ability for natural empathy with other humans yet the clear ability to simulate it convincingly.

This is a topic that interests me greatly, as it does seem that men are particularly prone to this and other developmental mental illness (such as schizophrenia).

Is Autism a specifically defined thing and is there an actual test that tells you straight answer whether someone is Autistic or not?

It seems to me that a lot of mental "disorders" are not well understood at all and are just given a name because it makes it look as though we really understand what is going on.

I'm not sure that Autism is one of these things, so apologies if I am totally wrong in this instance.

None of you who work with autim can appreciate what it is to have an autiistic child and the effect on his family. All the knowledge in the world cannot prepare you for the cruelty of other children and adults, that strikes straight to the heart. Every blow, every kick, every rejection,and there are many, are as if it were delivered to you, in fact it's worse because you would rather it be happening to you. You can cope with it, the A/S child cannot.
School was a nightmare. The times I have been called an over anxious mom. The teachers that were hurtful. The guilt as to were I had gone wrong. The taunts to my other childen about their "daft" brother. All takes it's toll on family life.
Only when you have an autistic child can you say you really understand.
Hazel
PS he does have a special gift.

In order to be diagnosed with autistic spectrum disorder or Asperger's Syndrome the child (or adult) is tested against the DSM IV's criteria for diagnosis. So although there isn't a direct test for autism like for many physical disorders, the patient has to display certain behaviour in order to be diagnosed as autistic.

With regard to Hazel's post I feel she is right. While us "professionals" are able to walk away from our jobs, the true impact of a child diagnosed with autism can only be felt by family members themselves.

Originally posted by Lucy_Smith

With regard to Hazel's post I feel she is right. While us "professionals" are able to walk away from our jobs, the true impact of a child diagnosed with autism can only be felt by family members themselves.

I'm both. I work with children with mental health problems, and I have a member of my family who has Asperger's syndrome.

Originally posted by Phanerothyme

I would say (again without the benefit of in depth knowledge) that Aspergers, and Autism are expressions of the same thing that manifests itself in many men - a desire to control and understand the environment through categorisation or organisation, a limited ability for natural empathy with other humans yet the clear ability to simulate it convincingly.

This is spot on, Phan - although I have met one or two girls who were very similar.

People with Autistic Spectrum Disorders suffer from what's know as the Triad of Impairments (of social interaction, communication and thought/behaviour). There is more information here (http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=458&a=5489).

What takes some understanding is how these impairments affect an individual's day-to-day functioning in a variety of environments.

My youngest son was diagnosed with autism 6 months ago- it didn't come as a shock as I knew something was amiss. When he was smaller a lot of his strange behaviour was attributed to 'terrible twos' by the public. We are starting to get more and more dissapproving stares now as he's getting bigger and this will probably get worse- I will need to develop a thick skin and a concise way of explaining his difficulties when necessary.

Since reading so much about autism over the last few months, I have come to believe the I have aspergers syndrome. I do not see this as a problem - it explains so much about the way I think and feel, so much makes sense now and I actually feel better about myself with this insight.

My father also had aspergers syndrome though I didn't know this until recently, so there is obviously a strong genetic factor within my family. My older son has possible AS but since he is happy and not having problems at the moment, I am not pushing the issue.

The biggest problem people who have ASD face is ignorance from the public as it is such an invisible condition.

Hazel is right, no one prepares you for the heartache of having a A/S child, whats more, when she had her child and I had mine, we were blamed as over protective mothers, or in my case and unfit mother, which is rather strange as the person who called me that is nowhere to be seen, but I'm still here thirty years later.A/S is supposedly the more able end of the autistic spectrum, and they don't usually have problems with speech, but life is so hard for them, because they want to be like everyone else, but have little social ability,my sons had eggs thrown at him,been tied to a lamppost, till his ankle bled with rope burns.As this is now recognised much more now, I hope any children who are diagnosed get treated better than mine was, and hopefully "the system" gives them a better start in life.

My sister has a form of autism, and learning disorder/ disability, called "Fragile X Syndrome".

I remember her diagnosis when I was about six. she'd have been about four years old.

I slightly misheard what the adults said, and for ages i went round, proudly telling everyon "my sister's Artistic"...
funnily enough, she has a "savant" givt, and that's being Artistic. isn't that weird?
lol

Her middle son has inherited the Fragile X syndrome, from her. he is slightly more ffected with it. he is working at about 4 years of age, mentally, even though he is fifteen.

he also has a savant gift, which is being able to recognise with unerring accuracy, the make and model of every car he sees, even if the merest glimpse is caught of it.

PT

My son has Tourettes, OCD, and possible AS difficulties (more assessments when he is more co-operative will tell!) Tourettes is on the same kind of spectrum of Neuro problems as Autism/Aspergers and he shows a lot of the same behaviours. He has a lot of stereotypies (sp), hand flapping, odd voices etc that are typical of autism. Unlike 'typical' autism (or as most people see it) he is very 'in your face'. He will stare and grab your face when talking to you at times and is constatly touching people. He is also very direct and makes extremely personal comments to/about people.

Sometimes I wish he could wear a T-shirt saying "I'm not naughty, I'm Neuro-Diverse!" It's hard having to explain yourself/him all the time.

Originally posted by Lucy_Smith
I have worked with children and adults with autism for about five years, both in schools and more recently have worked on intensive behavioural programmes for children with autism (Applied Behaviour Analysis).

I'd say that on the whole people's level of understanding about the disorder is improving but I do still encounter the odd few ignorant people. The most ridiculous stories I have heard include people thinking autism is "catching" and that children with autism are just "naughty". Anybody who has worked with children on the spectrum can tell the difference and unfortunately these sort of comments are just about ignorance. Also people seem to think children with autism are all super-intelligent (probably because of the film Rainman). In my experience this is incredibily frustrating for families and even those families with very high functioning austistic children can experience many problems with the simplest things, such as sleeping, eating etc.
This may seem rediculous but i have been looking into autism only for a matter of weeks... my grandaughter who is a mere 6 months as very late development and doesn't do anything at all yet... she as had major problems with her bowels since birth, she as very rigid movements and goes very stiff, she cries continuously... I have asked many people about their situations and they have told me their brothers and sisters started of like this and now suffer and have been diagnosed with autism,,, I feel quite ashamed of myself to think that my young grandaughter could have this being a mere 6 months and to not automatically assume that she is perhaps a late developer, she cannot hold a toy yet and doesn't move or learn from us, yes i know she is still very young but i want to know more because i want to help her as soon as possible, if this is the case, she doesn't stop screaming form when she wakes till she sleeps and all other symptoms have been illiminated such as colic, teething, belly ache etc, im sorry if im being to forward in my thinking, and i don't want to upset anyone i just want to help my grand daughter does anyone here know of the symptoms i have mentioned rang any bells with their sibblings or the children they nursed
At the end of the day it's all about teaching people why these people may behave differently and encouraging tolerence.

my 12yr old daughter has autism, epilsey,and oppositional behaviour probs, adhd, post traumatic stress disorder and learning difficulties all our family are suffering as the professionals dicided she needed a 24hr 7 days a week placement as there were no schools in sheffield they took her to a school out of our city so we only get to see each other once a week for less than 2hrs at a time this is heartbreaking for me as her mum and to see the pain in her eyes when she tells me she wants to come home i cant give her no false hopes she doesnt understand why shes there
she wont /cant ecept ive got pr but it doesnt account for nothing as if i dissagree with the socail workers they just go and get a court order to go against the parent so my hands are tied she could be at this school till shes 19yr and then if they still say she cant come home they can get another order from the courts to keep her indefinately
and ive got to try and come to terms with this
im living a nightmare and so is my child
the only thing i can do is cut my emotions off but how can any mum do that
i cant

Originally posted by Plain Talker
My sister has a form of autism, and learning disorder/ disability, called "Fragile X Syndrome".

PT

My son is going to be tested for fragile x, as he exhibits some of the physical symptons- flat soft feet, hypermobile joints etc. I'm trying not to think about it too much- take each day as it comes.

Plodder

My A/S son didn't suck well when born, but I was not aware of any slowness in development except he never crawled, He got up and walked at 13 mths. he cried constantly and never slept well, never slept thro a night. Talked so early I thought I had a little proffesor on my hands.
I hope this helps
Hazel

Ange, my heart goes out to you I have some experience of what you're saying, my son eventually went to a special school, not particularly suited for the Autistic, but all disabilities were lumped together then,so I think they all suffered, but it was suggested to me that he would "benifit" from residencial accomodation, thinking they knew better than me, I allowed it, God it eats away at your heart so see them so unhappy, but after a while, not only was it nearly killing us all, we found it made things worse, he was getting more and more withdrawn, so I said I wanted him back home, and this was when I was accused of being an unfit mother.This has had repercushions on me and my son, because even now he won't leave me, he won't go anywhere on his own, and neither can I, and that is thirty years ago.If ever you want to talk PM me, but have you heard of the Caring, sharing, project, they have and still are a Godsend to me.

Hazel, I'm sure we're sharing the same son, the only differance is mine wasn't a professor, he also has a learning disability, but mainly they are so similar, we may be much older now, but we still have all the memorys good and bad, but we've also had loads of funny moments, and I bet you wouldn't swap them for a million pounds.

Hi Mary,

I too feel for you Ange,
I feel that my troubles have been few at the side both of yours
I do not know how I would have felt had my son been taken from me by an authority that I know now, knew not much more than me.
It doesn't seem as if anything has changed in the intervening years, between Mary's son's treatment and ange's daughter.
I had thought that the autistic children of today had a much fairer deal than mine, but ange's experience makes me despair and think that nohing has moved on.
Hazel

Originally posted by espadrille
See previous thgread on dating the physically handicapped and my post dated 26/1/05

It would be great for me( just out of interest) to get some reaction and see whether people understand anything about the difficulties that people with autisnm and Aspergers face in society in general.

I appreciate your comments

I myself suffer from Aspergers so I understand perfectly the difficulties as I have experienced them first hand.

If you would like to talk to me on the issue, my MSN addy is yorkshire_xboxkid@hotmail.com or my Skype name for a voice chat is richallen.

It is overwhelming to get such a big response to this thread.
My son attends king edwards upper school but everyday, there is some problem or other to sort out with his challenging behaviour.

Last night we had a visit from the YouthOffenders Team as he had accidentally caused some damage to a car by rolling a massive electric cable down a hill and smashing the car up.

In his view, he was being a responsible citizen and was moving the cable out of the way of cars!!

He just doesnt get it.
I can be absolutely distraught and upset and he does not care at all.
he will say that he does but to look at him, there is no reaction whatsoever..
It does not help that I have a diagnosis of atypical Aspergers so you can imagine how my husband and daughter feel.

Families do not get support at all as people often do not understand it.
My son has been aggressive towards me.He has smashed up things in the house..but if I was to call the police for protection, they would say that as he has problems, it is nothing to do with them.There is research projects going on at The university and a link has been established with police but I am unsure as to whether the bobbies on the beat have yet got the message!
There is an aspergers parent support group that meets once a month at the Carers Centre.
the website address is at work.I will get it tomorrow and post it for you all.

This topic is obviously affecting lots of people, and most don't seem to know which way to turn, I have found a web site that has been extremly helpful to me at times, if they don't know the answers, they can point you in the right direction.They are all mums and dads of children with the autistic spectrum, and all are very friendly, good luck to you all and share your problems with people who will help you.

http://www.krism.org.uk/asp/index.php
showtopic=150&st=200

i feel so isolated and alone in my situation as i dont know any1 who has been though what im going though and i really wouldnt want any1 to go though it
i was in a very abusive marriage befor my daughter was taken i agreed that none of us were safe from this man the socail workers told me to get him out and they said they would help(they didnt)
a month later my daughter told her foster carers her step dad had abused her and they still didnt help me to get him out ,nor would they tell me what he had done they turned their backs on me and yet all ive ever done is ask for there help
me and my daughter had both been told that she could come home when id got him out
it took till march for me to get him out of my house he died in june he couldnt hurt us no more and then they say her needs are to complex to come home
wheres our justice
iam not even allowed to bring the subject up with my own little girl all i want to do is put my arms around her and cry we were so close and im not allowed to show my emotions to her as she cant handle me upset so we both have to be brave for each other
my hearts in pieces

Ange

I'm sorry I can't put into words the combination of sadness and anger I feel after reading your message. Please don't feel alone, you need help and support and i'm sure there are people in the Forum that will be able to help with this.

I don't know all the details, but it sounds as if you and your daughter have been very badly mis-led and let down. I'm angry that we are supposed to live in a democratic, developed and caring country yet who is caring for you? I'm sad because whatever help your daugher needs, this should be provided in the way that best meets your and her needs, in the most caring and effective way possible.

I can't claim to understand what you must be going through but I can be here for you if you want to PM me.

Ange, you must get help, why not try the AS forum they will give you specialist advice.

Ange, hang in there mate, don't let them beat you.

I looked at the Sheffield social services webpage.

http://www.sheffield.nhs.uk/socialservices/

It states: Purpose of Social Services in Sheffield:
The Council works for all its citizens and communities. As a part of the Council, social services works within the framework of the law and its resources to:• protect and strengthen the well-being of people and families in Sheffield, focusing on the most vulnerable.
• work together with people, their families and with other organisations to ensure the provision of helpful, timely and good value social services.

I feel they have lost sight of their own mission statement.
Maybe they need reminding?
You can bet any of their representatives can bang-on for hours about Holistic Approaches to family inclusion etc...



with love ;)

Ange

Have you got a legal representative? Get yourself down to the Citizens Advice Bureau or Howells Solicitors or Irwin Mitchell (both legal firms are specialists in this kind of thing, and have the reputation of rottweilers when it comes to representing people in the health/disabilities/social care system. It would be unlikely for you not to be eligible for legal aid, and it sounds like you could do with someone to cast a legal eye over your story and see if the situation could be improved.

At the risk of sounding unsympathetic which I'm not, would it be worth finding someone like a counsellor to help you sort out for yourself how much of your pain is about your child receiving an inappropriate service, or your own need to have your child near you.

Hope that makes sense.

i do have a solicitor at howells and was told that if i contessed what the professionals had recomendered which was a 7day school placement the only other school was as far as
aberdean that would be a 5day placement where she could come home at the weekends but they told me i had to have counciling be for they would allow her home and that she would be fostererd out but the professionals
wouldnt recomend that she said it wasnt an option so and i was told she has 2go to school by law so theres nothing i can do but just wait until shes 19yrs knowing they still going to do assesments and they could still keep her under the mental health act and keep her when shes an adult
so we hath both got a lot more pain and sorrow i have to try and come to terms with this
and i just want to say a big thanks for everyones surport its nice to know people do care
Ange x

Just found the site. My 5 year old has just been diagnosed with Aspergers so still trying to come to terms with stuff. Are there any groups for parents in the area? School not being very helpful. Any suggestions?

I have Aspergers myself... I have difficulty in making and maintaining lasting friendships as a result of my not so good social skills... But I try my best.

Originally posted by Siouxsie
Just found the site. My 5 year old has just been diagnosed with Aspergers so still trying to come to terms with stuff. Are there any groups for parents in the area? School not being very helpful. Any suggestions?

If your child needs support, there's an excellent support service specifically for autistic/Aspergers people called Thorne House Services for Autism, I myself get regular support from them being an Asperger's sufferer, they're based in Thorne near Doncaster but have a Sheffield office on the Vikinglea estate in lower Manor.

Their number is 2545728 if you ring up mention my name Rich Allen.

Hope this is useful and helpful information for you.

Originally posted by Siouxsie
Just found the site. My 5 year old has just been diagnosed with Aspergers so still trying to come to terms with stuff. Are there any groups for parents in the area? School not being very helpful. Any suggestions?

Which area of Sheffield are you in?

One of the difficulties people with Asperger's/Autism face is with their views which are often so different to normal ones.