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PLEASE SIGN THE ADULT AUTISM STRATEGY
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PLEASE, PLEASE, PLEASE can everyone who has a loved one or knows someone on the autistic spectrum fill in the link below. It is a petition to ask your MP urging them to act to make sure that the Autism Strategy is good enough. It might hopefully make a difference to all families who are affected by autism, as at present there is NO guarantee that we will receive any help when our children finish off from school. I have a lot of friends who have been let down by the system and it is heartbreaking to see them in the mess they are in. I know a lot of you have already filled the petition and I am very grateful for it but we need to do more to achieve our goal.
http://www.campaigns....0&ea.campaign.id=5553
THANK YOU VERY MUCH INDEED AND A BIG GOD BLESS!
http://www.campaigns....0&ea.campaign.id=5553
THANK YOU VERY MUCH INDEED AND A BIG GOD BLESS!
Answers
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This is a genuine question. I know little about Autism, but seeing your post, I Googled it and hit an article from the Times, talking about Autism in girls.
The article had quite a few comments posted, some of them from adults with Autism or about adults with it. These responses from sufferers seemed very articulate and well argued, and the comments about adults with it seemed to show them doing some good things at University.
Please can you give me some understanding of the difficulties that these sufferers face, since my impression was that such people find communication difficult - is that impression wrong?
The article had quite a few comments posted, some of them from adults with Autism or about adults with it. These responses from sufferers seemed very articulate and well argued, and the comments about adults with it seemed to show them doing some good things at University.
Please can you give me some understanding of the difficulties that these sufferers face, since my impression was that such people find communication difficult - is that impression wrong?
Hi Androcles, autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction. The report that you have read is mostly about adults who are high functioning or who have Asperger syndrome. Asperger syndrome is a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people. Autism is often described as a 'spectrum disorder' because the condition affects people in many different ways and to varying degrees.
But for children and adults who are diagnosed with high level of need or low functioning, their day to day lives and the lives of their families can be a living nightmare.
My lil' boy had been diagnosed with autism and was non verbal till the age of 4. We spent a huge amount of our own money on speech therapy and music therapy and now he talks (not like an average 6 year old) but he is able to let us know what he needs and all his aggression has gone (most of it was due to frustration of us not understanding what he wanted when he was non verbal). But I am just a handful of parents who have been able to afford the expensive therapy (private speech therapist was £70.00 for 30 minutes) as my husband is working. Most families are torn apart and most marriages are broken when you have a child with autism than any other disability becos it puts profound and continous pressure on the whole family. This is the reason why we parents with children with autism are campaigning for the Adult Autism strategy so that the lives of our children and the current adults with autism are made more bearable.
But for children and adults who are diagnosed with high level of need or low functioning, their day to day lives and the lives of their families can be a living nightmare.
My lil' boy had been diagnosed with autism and was non verbal till the age of 4. We spent a huge amount of our own money on speech therapy and music therapy and now he talks (not like an average 6 year old) but he is able to let us know what he needs and all his aggression has gone (most of it was due to frustration of us not understanding what he wanted when he was non verbal). But I am just a handful of parents who have been able to afford the expensive therapy (private speech therapist was £70.00 for 30 minutes) as my husband is working. Most families are torn apart and most marriages are broken when you have a child with autism than any other disability becos it puts profound and continous pressure on the whole family. This is the reason why we parents with children with autism are campaigning for the Adult Autism strategy so that the lives of our children and the current adults with autism are made more bearable.
Sorry Androcles, could not write any more but this is a continuation to the above.
If you need any more information you could look at the website of the National Autistic Society. They are very good and they champion the rights of all families affected by autism.
http://www.nas.org.uk...jsp/polopoly.jsp?d=10
And please sign our campaign and get as many people as you can to do it becos you will be making a huge difference to our lives in the present and in the years to come.
BIG GOD BLESS!
And thank you very much for your question becos the more people who are aware of autism the better for us in the long run.
If you need any more information you could look at the website of the National Autistic Society. They are very good and they champion the rights of all families affected by autism.
http://www.nas.org.uk...jsp/polopoly.jsp?d=10
And please sign our campaign and get as many people as you can to do it becos you will be making a huge difference to our lives in the present and in the years to come.
BIG GOD BLESS!
And thank you very much for your question becos the more people who are aware of autism the better for us in the long run.
Hi society, thank you very much indeed for signing the petition.
cazzz1975, I will circulate a mail that a mum who has 2 children who are now adults on the spectrum have sent us. This is the reason why I put the petition yesterday. I signed it more than a month ago and sent emails from my whole family but it looks like we do not have many people who have signed it. The mail may be in 3 to 4 bits so please forgive me for that but it makes very interesting reading.
cazzz1975, I will circulate a mail that a mum who has 2 children who are now adults on the spectrum have sent us. This is the reason why I put the petition yesterday. I signed it more than a month ago and sent emails from my whole family but it looks like we do not have many people who have signed it. The mail may be in 3 to 4 bits so please forgive me for that but it makes very interesting reading.
Spare me 5 Minutes to read this note if you live with autism please.
Sometimes it is easier not to think about what it is going to be like for our autistic children when they become adults. As the Mother of two sons one of them already an adult this is something that I have already had to face. If life can appear to be one big fight for us to obtain the services, provision, support and schools that our children need to meet their often complex needs at least there is something there that we can fight for.
The eldest of my two autistic sons is 23 years old this year. He has seen no one that has any in depth of knowledge or understanding of autism since he was 16 years old. As well as having Aspergers syndrome my son also has a complex visual impairment which could result in him requiring a double cornea transplant at some point in the future. Not only is my son not receiving any services, provision or support, apart that is from his family and his one true friend, he is does not even appear on anyone’s radar.
Sometimes it is easier not to think about what it is going to be like for our autistic children when they become adults. As the Mother of two sons one of them already an adult this is something that I have already had to face. If life can appear to be one big fight for us to obtain the services, provision, support and schools that our children need to meet their often complex needs at least there is something there that we can fight for.
The eldest of my two autistic sons is 23 years old this year. He has seen no one that has any in depth of knowledge or understanding of autism since he was 16 years old. As well as having Aspergers syndrome my son also has a complex visual impairment which could result in him requiring a double cornea transplant at some point in the future. Not only is my son not receiving any services, provision or support, apart that is from his family and his one true friend, he is does not even appear on anyone’s radar.
My son is not unique sadly this is an all too familiar picture of life on the spectrum for our adults across the length and breadth of England. Not thinking about our children becoming adults is not going to stop it from happening. We need to make sure that there is at least something there that we, and they, can fight for here in England.
Last year people like myself were elated when we managed to achieve the Autism Act 2009. This act places a new legal obligation on the Government to publish an Adult Autism Strategy that delivers real change.
I am a member of the External Reference Group who has been helping to inform the Department of Health as to what we believe should be included into the adult’s strategy. I was very honoured when I was asked to become a member of this group and have always fully understood the importance of making sure that the strategy includes the things that would ensure that the ‘real change’ was delivered to the many thousands of autistic adults who quite simply do not exist, and like my son do not appear on anyone’s radar. I feel a responsibility to the thousands of adults who like my son see no one and have no provision. I think that the worst thing for me was finding out beyond any reasonable doubt that there really is nothing at all to fight for in far too many areas of England
Last year people like myself were elated when we managed to achieve the Autism Act 2009. This act places a new legal obligation on the Government to publish an Adult Autism Strategy that delivers real change.
I am a member of the External Reference Group who has been helping to inform the Department of Health as to what we believe should be included into the adult’s strategy. I was very honoured when I was asked to become a member of this group and have always fully understood the importance of making sure that the strategy includes the things that would ensure that the ‘real change’ was delivered to the many thousands of autistic adults who quite simply do not exist, and like my son do not appear on anyone’s radar. I feel a responsibility to the thousands of adults who like my son see no one and have no provision. I think that the worst thing for me was finding out beyond any reasonable doubt that there really is nothing at all to fight for in far too many areas of England
As a member of the External Reference Group I have a copy of the draft Adults Strategy. The draft copy is embargoed and I am not allowed to share the contents of the draft with anyone. I can however see no reason why I can not share part of my response to the draft strategy which was that it reads ‘like a badly written statement of educational needs’. I think that the majority of parents will probably realise the significance of those words – that is if you have actually managed to get a statement for your child! Real Change can only be delivered if the strategy steps up to the mark. As it is written at the moment is falls about one million miles away from the mark in my personal opinion.
The National Autistic Society is appealing to parents, carers, family members and autistic adults to ‘Take Action Now’ in an attempt to get the Department of Health to look again at the contents of the strategy.
The NAS are asking us to take 5 minutes to e-mail our MPs – the letter is already written for us – and to tell our MPs why this strategy is so important to us. This does not have to be a wordy response. It is simply enough to say that the strategy is important to you because not even having anything to fight for is simply too much for parents to contemplate. Here is a link to the NAS page
http://www.campaigns....0&ea.campaign.id=5553
The National Autistic Society is appealing to parents, carers, family members and autistic adults to ‘Take Action Now’ in an attempt to get the Department of Health to look again at the contents of the strategy.
The NAS are asking us to take 5 minutes to e-mail our MPs – the letter is already written for us – and to tell our MPs why this strategy is so important to us. This does not have to be a wordy response. It is simply enough to say that the strategy is important to you because not even having anything to fight for is simply too much for parents to contemplate. Here is a link to the NAS page
http://www.campaigns....0&ea.campaign.id=5553
The Department of Health already knows what the strategy ‘should’ contain.
During a public consultation last year, thousands of people told the Government what is needed to improve the lives of people affected by autism.
You can read some of the responses here http://www.swdc.org.u...missions-received.pdf
You can read the Autism-in-Mind response to the consultation here http://aim-one-voice.blogspot.com/
Please take 5 minutes of your day to respond to this mail by ‘Taking Action Now’ and if you could forward it to any groups or parents who you think needs to be aware of this mail. Time is running out the strategy will be published by the end of this month. We need to act fast and we need to act now.
Carole
PS My MP has already responded to my plea and if I am being honest I was not sure that he would even reply to me. Nothing ventured nothing gained as they say.
During a public consultation last year, thousands of people told the Government what is needed to improve the lives of people affected by autism.
You can read some of the responses here http://www.swdc.org.u...missions-received.pdf
You can read the Autism-in-Mind response to the consultation here http://aim-one-voice.blogspot.com/
Please take 5 minutes of your day to respond to this mail by ‘Taking Action Now’ and if you could forward it to any groups or parents who you think needs to be aware of this mail. Time is running out the strategy will be published by the end of this month. We need to act fast and we need to act now.
Carole
PS My MP has already responded to my plea and if I am being honest I was not sure that he would even reply to me. Nothing ventured nothing gained as they say.
Hi cazzz1975 the speech therapist used the same modules that a speech therapist on the NHS would use. My son started using Makaton(sign language) and he was totally non verbal and now he talks non stop. Our speech therapist used to be in charge of the speech and language dept at our CDC but after having her children she chose to be independent. She is very, very good but expensive and I know of atleast 3 other boys besides my son who have autism and were totally non verbal who went to her but who are all talking now and attending mainstream school and are doing well.
So a very expensive investment indeed but it paid out hundred fold in the long run and I have no regrets at all. But for lots of other families who cannot afford it, it is very sad and that is why I am doing my bit.
She used to make sure that my lil' boy was looking and making eye contact all the time and his concentration and listening skills became better. Also his attention span has improved so much. I could not get him to sit at a task for even 5 seconds now he can do spellings for atleast half an hour so it has given me results.
So a very expensive investment indeed but it paid out hundred fold in the long run and I have no regrets at all. But for lots of other families who cannot afford it, it is very sad and that is why I am doing my bit.
She used to make sure that my lil' boy was looking and making eye contact all the time and his concentration and listening skills became better. Also his attention span has improved so much. I could not get him to sit at a task for even 5 seconds now he can do spellings for atleast half an hour so it has given me results.
Hi cazzz1975, this lady too was asked the same question if signing the petition now would make a difference and her answer was:
Thank you everyone. We might not change the world or even change the strategy as it stands at the moment by that much, but the people who make the decision that impact on our lives need to be aware that we are not going to roll over while they kick us in the teeth.
And i think GO GIRL.
Thank you everyone. We might not change the world or even change the strategy as it stands at the moment by that much, but the people who make the decision that impact on our lives need to be aware that we are not going to roll over while they kick us in the teeth.
And i think GO GIRL.
with no disrespect for them to be able to attend mainstream their autism must have been more managable than someone who is low functioning, There are a lot of verbal children who attend special schools. speech therapy will not mean that autistic children can attend mainstream unless they are high functioning and receiving adequete support in school. whilst its nice that you have had success with your son, he quite possibly may have began using speech on his own which is common at that age (4-7) independently of the speech therapy
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