Cat

Our offering for autism awareness month. Cat

Sometimes keeping our children safe means that we need to protect them from themselves. Secondary school can be very difficult for children with autism, especially those who need friends. The situation that you have outlined in your post could have been written by a close friend of mine who is living a similar nightmare to yourself. However despite the school keeping this child in at break and lunchtime the situation has really escalated and is now almost at crisis point with the next move for my friend's son being placed in an EBD school where he will be mixing with even more challenging children than he is now. I am very hard on my own teenage son and we make it perfectly clear to him that autism or not he is not outside of the law and that acts of physical aggression will simply not be tolerated. We are fortunate that our son is rarely aggressive these days (physically aggressive) although he often has verbal outbursts that I put down to his hormones. We have intervened and ended friendships that we felt were not in the best interest of our son - as I said I believe that sometimes our children need protecting from themselves. The school do not appear to be handling this well and despite being told that a diagnosis is not necessary were I you I would need something by way of an explanation if nothing else and a diagnosis should be a passport to better provision and support. Even though the school could do better I would be making sure that I made no excuses at all for abusive behaviour and I actually agree with Baddad I have seen what is happening to my friend who I think is now afraid to stand up to her son and that is never a good place to be with an adolescent who has autism. Cat

My adults son has AS, Keratoconus (KC) (a progress and degenerative eye impairment) multiple allergies three skin conditions and has seen no one about his autism since he was 16. Who are we going to be able to call on if he should fail his DLA reassessment which was awarded to him for life? My worry is that because my son has never ticked the right boxes for support and services he will be deemed not to need his DLA. His eye specialist fails to grasp who my sons AS and KC impact and interact with each other. So he will not be much use to us and he has no understanding at all about autism. There are many adults in the same boat as my son.I know for a fact that there is no one, and this includes the NAS, who are working in collaboration with the DOH regarding the new PIP benefit. I have this from the NAS themselves. There are other charities like MENCAP working with the DOH but no autism specific orgs. That really worries me. If autism was a well understood disability then we might not need to be concerned but it is not. The DWP ATOS assessors have 'apparently' all had a DVD training module. But this has not stopped them from finding 11 adults who have AS and who all live in the same LA fit for work following a works capability assessment. This pattern is being repeated in other areas. My gut feeling has been since the June budget that this Government will use whatever level of DLA or PIP that a person received to determine their other benefits entitlements. While I am sure that many adults with autism could work 'if' they had the correct level of support and understanding. There are many who have been failed by not only our education system but also our health service who can not work. Do we continue to punish people who have been failed by successive Governments? It would appear that we do. Cat

If the only reason that you wife has decided that you need to be supervised while you are seeing your children is because you have now have a diagnosis of AS then I think that she is being very harsh with you. There are lots of parents who have AS who do not need to be supervised while they care for their own children. Have you sought advice about your current situation from anyone? I also do not think that it is fair to use your diagnosis to punish you. I find that my 23 year old son who has AS takes any responsibilities that I give to him regarding his younger brother who is autistic very seriously. I know that I can trust him with the care of his brother. Just because you have AS does not make you a bad parent or a threat to your children. Cat

Last Year we saw the arrival of the Autism Act and from that Act the Government produced an Adults Autism Strategy 'Fulfilling and Rewarding Lives' The consultation about implementing this strategy finished a couple of weeks ago Autism-in-Mind's response can be found here. http://aim-one-voice.blogspot.com/ Although the strategy is weak and badly worded (this is not just my opinion)frontline professionals, and that certainly includes GPs now have a responsibility to ensure that any adult who turns up at their surgery is put on to the correct pathway to obtain a diagnosis. Below is a link to the strategy and some of the important bullet points that maybe you should go back to your GP with. Given that GP Consortia will be taking over from our PCT within the next 3 years it is time that GPs got themselves up to speed about autism. Your GP simply can NOT say that there is no funding around to enable you to get a diagnosis. This was the whole purpose of the strategy. He can not use lack of funding as a get out clause he now has a responsibility to ensure that your concerns about possibily having an autsitic spectrum condition. I would also ask your GP for a referral to an autism specific Pediatrician for your daughter. Sally already posted a link to the autism exemplar maybe you should take a copy of that to your GP to. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113405.pdf Frontline staff, from GPs to benefits advisers, acknowledge that their understanding of autism is limited. While most professionals know something about autism, they do not necessarily understand how autism affects people. This makes it hard for them to recognise autism and communicate appropriately. It also means they may have little idea of how to adapt their behaviour and their services. Many professionals recognise that this lack of understanding is a problem. The NAO report found that “eighty per cent of GPs feel they need additional guidance and training to manage patients with autism. DEVELOPING A CLEAR, CONSISTENT PATHWAY FOR DIAGNOSIS OF AUTISM 3.2 Diagnosis is particularly important for adults who have not previously had their condition recognised: their life to date may have been greatly affected by a sense of not fitting in, of not understanding the way they respond to situations or why social settings, for example, are difficult. 3.5 However, throughout the consultation process, respondents have repeatedly described their problems in accessing diagnostic services – and in gaining relevant support if they are diagnosed. Increasing capacity around diagnosis 3.11 By 2013, when this strategy will be reviewed, we expect there to be a clear pathway to diagnosis in every area. This does not mean that they wait until 2013 to have a pathway in place it means they have to be doing so now. Cat

The test on Facebook is the Simon Baron Cohen Test. The test can also be found here http://www.piepalace.ca/blog/asperger-test-aq-test/ and on various other Internet sites. Adult Autism Spectrum Quotient http://www.autismresearchcentre.com/research/project.asp?id=6 Simon Baron-Cohen, Sally Wheelwright, Akio Wakabayashi, Rosa Hoekstra, Nigel Goldenfeld, Bhismadev Chakrabarti, Mike Lombardo, Marc Woodbury-Smith, Rebecca Jones The Adult AQ (Autism Spectrum Quotient) was developed by the ARC to test if adults with high-functioning autism or Asperger Syndrome are just an extreme on a dimension of autistic traits that runs right through the general population. Our studies have shown that people with a clinical diagnosis tend to score above 32 out of 50 on the AQ, first-degree relatives tend to score higher than average on the AQ, males in the general population tend to score higher than females, and scientists tend to score higher than non-scientists on the AQ. We have also found the AQ shows heritability (from twin studies) and cross-cultural stability, and that it predicts clinical diagnosis. We are currently investigating if the Adult AQ can be used as a screening instrument to detect undiagnosed cases of autism or Asperger Syndrome. The aim is not to uncover cases who do not need a diagnosis, and it is recognized that at best the AQ is a screening instrument - it is not itself diagnostic. We are also testing if genetic polymorphisms (SNPs), patterns of brain activity and brain structure, and patterns of hormonal profile, are associated with AQ. Finally, we are testing if AQ is a predictor of performance on various cognitive tests, such as social-attentional cueing. Cat You can access a range of these tests here http://www.autismresearchcentre.com/tests/aq_test.asp they have been doing the round for sometime now.

Labour were the ones who signed up to the ESA assessment the Con/Dem coalition are simply continuing with their agenda. I am not sure that we have to sit tight and allow all of this just to happen to us. For starter the Government has broken the law by not carrying out an Equalities Impact Assessment. While they can get away with carrying out an Impact Assessment in some circumstances they must carry out and Equalities Impact Assessment. They finally admitted last week that that have not done this. The Fawcett Society (women's lib org) have challenged the budget and are seeking a judicial review. I am left wondering why some of our national disability charities have not done likewise. There are others who are looking into following in the foot steps of the Fawcett Society. ACT NOW have written their own Impact Assessment wrapped around the issues that parents, carers and adults with autism have communicated to them. ACT NOW had a bigger response to our request for input than Brian Lamb did. You can read the ACT NOW Impact Assessment here http://actnow01.web.officelive.com/impactassessmentreport.aspx SCOPE have also written a brilliant and in depth Impact Assessment which can be found here http://www.demos.co.uk/files/Destination_unknown_-_web.pdf?1286894260 Disability appears not to be high on anyone's agenda and that just about sums up how inclusive our society really is imo of course. Cat

Joined and behind you 100% ACT NOW will be continuing our campaign and number one on our list will be the ESA assessments that come in to play 'officially' next April - although they are already being trialed and the DLA assessments which will begin in 2013. Unless changes are made the effects of these assessments could prove to be catastrophic for adults with autism. We are already hearing horror stories from adults who have had assessments and were not allowed anyone to advocate for them and were told to look at their assessor while they were talking to them. We do have some MPs on board but we aim to get many more to listen to us. Cat

Brian Lamb said that low expectations of achievement should not be accepted for young people with SEN when he wrote his report last year. http://www.dcsf.gov.uk/lambinquiry/downloads/8623-DCSF-Lamb%20Implementation%20Plan.pdf Chapter One page 9 A Clear Focus on outcomes. 1.1 The Lamb Inquiry is clear: parents are most confident that the needs of their child are being met when they can see that the aspirations for their child are high and there is a real focus on progress, an independent life and employment in adulthood. The Government shares this view and our Implementation Plan shows how we will make this happen. Brian Lamb told us that in addition to high aspirations and a focus on outcomes, parents wanted someone who understands the needs of their child: we will help schools develop skills and capacity within their workforce to provide this. Parents will also be better able to access specialist expertise. Not sure how much of this the new government are going to stick with this. I was at a meeting where Sarah Tether was talking about the SEN Green Paper and was asking what we felt needed to be included in the paper. http://www.education.gov.uk/childrenandyoungpeople/informationforprofessionals/a0064379/sen-and-disability-green-paper-government-calls-for-views It's all change at the moment it would appear. Cat

Agree with you Tes and you are correct about one petition counting as only 'one' petition no matter how many names there are on it which is why we are only handing a copy of the petition in at No 10. We are hoping to use the petition to actually petition parliament. This is something that my own group have done before. The petition and the Impact Assessment report, which will be published on Monday are only the first part of what I suspect is going to be a very long campaign. Round two will involve both parents and MPs who like it or not are there to represent us. Round two will be announced after the 20th when we should all know much more about where the axe is going to fall. Cat

Yes it is gathering steam Karen and surely the next step must be for us all to join together because this will affect anyone who has a disability and of course many other people. Cat

Over the last few month 7 ardent campaigners within the autism community have been campaigning about the grave concerns that we have regarding the cuts to LA and PCT budgets, the benefit assessments that started their trials yesterday for those who are in receipt of Incapacity Benefit, and the change over from PCTs to GP consortia. Over 4500 parents,carers and adults with autism have signed in support of the ACT (Autism Campaigners Together) NOW Campaign and I would like to thank anyone here who has supported us. We will be closing our petition at midnight on Thursday so there is still time to sign in support but not much. We can find no evidence that the Government have carried out an Impact Assessment that is required when a law is about to be changed. So in the absence of a Government Impact Assessment we have carried out our own. We have been astounded by the input that we have had. We have actually had a greater response that the Lamb Inquiry had from parents and carers. On Monday October 18th we will publish our report at an event to be held at the De Vere Hotel in London and we will then hand over the petition side of the campaign to No 10 Downing Street. We have MPs and even a Lord attending our reception. We hope that we can make a difference - at the very least we have tried. Cat

I have always told my sons that there are somethings in life that they are going to have to do and can not be protected from no matter what. Swimming and having to expose any part of your body that you are not happy exposing is not one of those things in my opinion but then I am a pretty radical free thinker when it comes to autism. Life should not be about conforming and doing what everyone else does because everyone else does it, again my opinion. The eldest of my two autistic sons was sent home from school three weeks in a row after suffering an anxiety attack while being forced to play Rugby at school. I also forced him to do other things that he found extremely difficult to cope with. He had his first breakdown when he was 11 and his second when he was 13. Making reasonable adjustments is a legal requirement and even OFSTED recognised that if a child is having particular difficulties in a particular lesson then it was probably a very good idea not to force the child to attend that lesson. Their report was not specifically about autism it was about children generally but it made perfect sense to me. While I never use autism as an excuse ever for my two sons I will never force them to do what everyone else is doing because they need to be like everyone else because they do not. Being body dysmorphic can be quite common is autistic teens and adults and I would not want to make an issue out of something that need not become and issue - but as I have said I am a radical free thinker when it come to autism and my views are often different to other peoples - but being different does not make me wrong (nor does it make me right) or a bad person - which is something I am forever telling my two autistic sons about themselves. I totally agree that there are other things that your son could be doing that will enable him to live in our mainstream world as an adult PE and swimming are not two of those things.

I have a friend who has four out of four children on the spectrum. I have two and although my eldest son does not have a diagnosis I think that he probably should have. Your son sounds quite similar to my middle son who has a diagnosis of AS and who did not receive that diagnosis until he was 13. He did not have the same issues as your son with his bowels but I run a support group where I live and I do know families who have children with the same problem as your son. Some bowel issues are psychological and some of the can be sensory, including not knowing that they need to poo or liking the feeling of a full bowel (sorry to much information) My son would talk 'at me' none stop but I knew that we rarely had a conversation. We had question and answer sessions and talked about things that interested him but we never did chit chat. School loved my son and swore that he had friends and was popular - it was all rubbish. My son hated being shouted at and was often prone to crying even when you would have expected that he should have been past that stage. I would say go with your gut feeling on this one. Cat

How can any child who is spending their days at school employing coping strategies be either enjoying and achieving or reaching the full potential to 'be all that they can be' - which appears to be a buzz phrase for some LAs at the moment. School should not be about coping in my opinion, it should be about learning in an environment that at least tries to meet the needs of children autistic or otherwise. If every child really did matter we would not have as many children simply trying to cope with their school day. Generally speaking autistic children and adults find it difficult to multitask so I do wonder is coping strategies impact in any way on a child's ability to learn? Cat

This might sound like a stupid question but does your son actually know when he needs to empty his bowels? Autism and sensory issue go hand in hand and in my very unprofessional opinion that can also include internal sensory issues. I do know one autistic adult who is highly verbal but who is still wearing nappies. I have two autistic sons one with a diagnosis of AS and one with a diagnosis of High Functioning Autism. Both have internal sensory issues as well as external sensory issues. Both of my sons have problems knowing if they are hungry. One would eat all day and never knows when he is full while the other always has to be reminded to eat because he seldom feels hungry. My youngest never really knows if he is hot or cold. He is 13 now and he still has to ask me if he is hot or cold. The fact that he does not know if he is hot or cold has now become an issue because he now has a diagnosis of Raynaud's syndrome. This winter was one of our coldest in a long time and my son could not feel the cold. He was wanting to play in the snow and build igloos within 10 minutes his toes were as white as the snow but he could not feel that he was cold. He had the same issue with his fingers. So does your son know when he needs to empty his bowels. Is his body sending him the right signals or could he have external sensory issues which means that he enjoys the feel of the poo on his skin. If this is an external sensory seeking issue then he needs to find a suitable alternative to meet his sensory needs. Is it possible that your son can not explain to you the reason why this is happening because he does not understand it? I would want to make sure that none of the issues that I have mentioned applied if he was my son before deciding what to do next. Cat

No matter how much J relies on you, misses you, and wants to be with you - you - need time out from J. You are not a faliure you are a good Mum. It's call tough love Life should not have to be this hard for any of us

I used to tell my sons to say anything about other people's kids into my ear and my ear only. OK so some people thought that they were being rude but it meant that if they had anything bad to say about someone else's child it went directly into my ear. I would then say thank you for telling me. Of course we then had to have discussions about why other people do not discipline their children for doing the things that my sons felt needed action. It took a very long time to get though to them that all parents have and use different rules. But we got there in the end. I lost many of my friends after my two sons were diagnosed with autism. Partly because they appeared to be unable to understand that my sons were not just being nasty or naughty and partly because I found it too much effort to keep on trying to get through to them. If only they could walk a mile in our shoes

I carry a communication passport for my son when I have to go to a hospital or any other appointment with my sons (I have two of them). I made it myself and it basically says that my sons have autism and that when they are stresed and anxious that can sometimes result in inappropraite behaviour and problems with communication. It is only the size of a postcard and it is easy to carry in my handbag. I have so far been astounded by the positive response when I pass this card over to people to read. I sometimes think that when we are stressed we end up saying things in the heat of the moment. Passing on a card to someone to read can say it all without voices being raised and drawing even more attention to my sons. Cat

My son attended my wedding (second) wearing a track suit and a cap so that he could pull it over his eyes when everything got too much for him. He was there and that was all that was important to me. Are the Bride and Groom aware that your son has AS? I would hope that they would want your son to feel as comfortable as possible even on their big day. We were able to go through the order of the day with my sons (I have two of them with autism) so that they knew what was coming and when which made it easier on the day but it was still stressful for my eldest who has never been and never will be a socially autistic person. When you say 'we're priviledged to be invited' you might have to accept that your son does not see it that way. Cat

We agree that fighting this one disability at a time is not necessarily the right way to go. We are talking to other groups of other disabled people who we are hoping we can join up with at some point. Other groups of disabled people are also being active and are also fighting their own corner. It is early days at the moment. Sadly ony 15% of autistic adults are in full time employment at the moment as opposed to 44% of adults with other disabilities. This is not because these adults do not want to work. It is not easy for an autsitic adult to either gain employment or to keep it. My own personal fear is that someone who does not know my adult autistic son and how his autism affects him will assess him and decided that he is fit for work. He rarely leaves the house and never alone. If we had to go to an appeal we would have no one to support us as he has seen no one about his autism since he was 16 years old. He is not alone. I know that the NAS are very concerned about DLA at the moment. Yes there has to be cuts but we also need to find out where the 28,2 billion pound that is being spent annually on autism is being spent. Only 18% of LAs were able to tell the National Audit Office what they were spending their money on for services for Low Funtioning Adults with only 10% being able to answer the question re High Functioning Adults. Cat

ACT NOW Campaign Autism campaigners are working together to ‘ACT NOW!’ and have launched a petition which we intend to deliver personally to No 10 Downing Street. Our aim is to underline to Her Majesty's Government the catastrophic affect that benefit cuts and the assessments that will begin in 2013 for those in receipt of Disability Living Allowance, Employment Support Allowance and other benefits, coupled together with the cuts across Local Authorities and Primary Care Trusts will have within the autism community, where some of the most vulnerable people in the UK can be found. Parents, Carers and Autistic Adults (Adults with Autism) who live with autism 24/7, 365 days each year will be at the core of these cuts and will have to live with the fall out. While we are not opposed to cuts per se and understand that cuts need to be made we want it to be clearly understand the sheer magnitude of the changes and how they are going to impact on a community that is already marginalised and discriminated against. In 2008 the National Audit Office estimated that autism costs the UK 28.2 billion pounds each year and yet only 18% of Local Authorities who responded to the survey were able to give precise numbers of adults with low functioning autism known to services, with only 12% being able to do so for adults with high functioning autism. Given that thousands of children and adults do not meet the criteria for provision how much of the money being spent is on crisis management? The cuts to budgets in Local Authorities and Primary Care Trusts are going to make it even harder for children and adults to meet the criteria and access provision. We fear that only the minimum that can be supplied to these children and adults will be what is supplied. We are calling for urgent talks with Her Majesty's Government to ensure that those who live with autism 24/7 are consulted fairly and effectively in every aspect of the decision making process that will ultimately affect our lives. We would like HMS Government to address and respond to our concerns. We want HMS Government to address and respond to our concerns. ACT NOW concerns can be viewed on the 'About Us' Page Ivan Corea http://www.ukautismfoundation.org/ Richard Exley Autism Consultancy Services Larry Whybrow Gardiner http://www.parentadvocatestogether.org.uk/ Sandy Howarth Author http://www.linkedin.com/pub/dir/Sandy/Howarth/ Anna Kennedy http://www.annakennedyonline.com/ Carole Rutherford http://www.autism-in-mind.co.uk/

The Dads in AIM have always played an active part in the group. Some Dads are more active than others but the so are some of our Mums. I would never personally view my husband as a poor substitute for me. He is just as hands on with our son as I am. Dads are often working and do not have the time to spend rattling cages bars that Mums can. Living with autism 24/7 - 365/52 means that we are living autism awareness day everyday but that does not mean that other people are. The people that I would personally like to raise awareness with are professionals. There are still far too many of them walking around in possession of a little knowledge and as my Dad always said a little knowledge can often be a dangerous thing. Cat

To be fair Autism Awareness Day does not really belong to Autism Speaks but I do understand where you are coming from. Given that we made a big complaint to the UK branch of Autism Speaks last year about their 'I AM Autism' Video I think we are probably on the same wave length about them. Not my cup of tea really. We used the day to promote awareness and also because Dads are sometimes a little bit left out and should play an important part in the lives of their children. We are hoping that this will grow like the autism mothers did. We do not want to change our kids we want respect for their condition and the support and resources that they will need as they make their way through life without having to fight for it. Not that much to ask for really is it? Cat

To mark World Autism Awareness Day, which is today officially today April 2nd, some of the Autism-in-Mind Dads have been standing up for autism solely to raise awareness of the condition. Will you stand up with our Dads? I 'AM' http://www.facebook.com/#!/group.php?g...0739&ref=ts Cat