trekster

Whoever told you that didn't know what DLA is about. DLA is for people who need help looking after themselves, whether it be in the home or when they go out. It has nothing whatsoever to do with work. Personally i think everyone with a disability should fill out a DLA form even if they think they are going to be turned down. Better to try than to not know. If you can get a copy of the "taking responsibility report". There is a page called "practical support services" where you can use those examples of help we might need for your application. The treatment you are receiving is disgusting and im sure you can complain under the DDA. Calling the EHRC (european human rights commission) should be a good start for you. Also the autism helpline (which would know your rights better). The autism helpline is better contacted via email since you have some physical evidence to show them. If you try and contact your regional officer (or the bristol autism officer Simon Allen (NAS filton) if you live near Bristol) they should be able to word your letter of complaint with you. Alexis

Looks like you are currently on Jobseekers Allowance? Could you send them a copy of the psychologists report that metnioned that "full time education is best for you at this stage" ? If you can find some evidence of your unsuitability to work then the job centre have to follow this. Email the autism helpline and see what they can help you with. www.autism.org.uk/enquiry They have given me lots of pointers in the past. They cannot stop disability benefits if you dont attend a work placement scheme (unless thats the new employment and support allowance rules?) If you lived near Bristol i could help you fill in DLA and other disability forms so you could have more to live on and get out of JSA trap. Good luck and im sorry you are stuck at the moment. Contacting your local autism society is another idea. Alexis

Dairy does take a matter of days to work. Agreed it was due to less bowel problems as pain is distracting for us. i was much more easier to get along with post diet whereas before i was "permanent PMT"! Going off liquid risperidone (was reacting to benzoates in it) had an immediate effect. i think it depends on the persons age and metabolism. i found McCain Smiley faces to be safe at the time. Not chips i know but still a potato product. Would he accept home made chips? Alexis

Wow that is a big change and it happened with me as well. Since hes a small kid it will take him less time for gluten to get out of his system than me. No not a placebo at all, he has less gut pain so can concentrate on what you are saying to him. i found when i went to the canaries recently my initiative worked as my fibro pain went! i was still on the same supplements and eating almost the same food but once we got back on the plane and took off i was in pain again. He is trying to blackmail you into giving him is addictive gluten back. You are the parent so keep him off the stuff. Gluten is in all sorts of things including glue, playdoh, stamps even one brand of fish oils had gluten in them! If he appears to regress later on then post in here and ask what sort of supplements you can give him. It will take him sometime for his palate to adjust to his new diet. i know of one autisitc who had nothing but soy milk for weeks. Are you also going to try milk, msg and aspartame free? Will he eat fruit? What about smoothies? Im sure some parents will be able to tell you their inventive ways of getting veggies into their kids diets. "dietary intervention and ASD" is a good book. A less scientific one "User guide gf/cf diet for autism/aspergers and AD(H)D" and that's funny and written by an asperger teenager. i want him to sign my copy as i couldn't contemplate this way of living until his book came out. Alexis

Heres the NAS description of anxiety Anxiety in someone with an ASD Anxiety is common in people with an ASD. It can happen for a range of reasons and people can vary in their ability to cope with it. Anxiety can affect both the mind and the body, and produce a range of symptoms. The psychological and physical symptoms of anxiety are closely linked and so can lead to a vicious cycle that can be difficult to break. The psychological symptoms of anxiety are: * easily losing patience * difficulty concentrating * thinking constantly about the worst outcome * difficulty sleeping * depression * becoming preoccupied with or obsessive about one subject. Its physical symptoms include: * excessive thirst * stomach upsets * loose bowel movements * frequent urinating (going to the loo) * periods of intensely pounding heart * periods of having gas * muscle aches * headaches * dizziness * pins and needles * tremors. http://www.autism.org.uk/nas/jsp/polopoly....427&a=19737 Alexis

Welcome Steve, im Alexis, diagnosed 14 years ago age 16. Had to wait 18months (have been told this was the average waiting time) and gran had to pester the doctor to refer me. i think i was the 1st patient in that practice to be diagnosed Asperger at the time. It was also a relief for me but i knew something was missing, now ive got other diagnoses added on (including the self diagnosis of OCD due to hoarding and spending). Sounds like me pre diagnosis, i only get like that when im severely depressed which strangely enough was Xmas 05 at our social group xmas meal. It was annoying that one person i was sitting with was morning her fathers death and the other just kept asking me repetitive questions. i had given up university a year earlier due to bullying and was just drifting not really going anywhere with my life. im currently severely depressed but at least it's responding well to 5htp which it wouldnt do to conventional medicine. Well done for persevering. When i 1st attended asperger teens group in Bristol i was very nervous and had problems talking with others. i settled in within a few months (quicker than other environments) and started to embrace my new autistic social life. My friends have been with me through thick and thin, 2 even kept in contact with me when i had a breakdown at college (ive since come close to one twice). i was also poor at English literature except "pride and prejudice" as i could relate the characters to people in real life. Social imagination is an autistic thing and ive found mine has developed slowly over the years. Strangely enough EastEnders and Coronation street or other soaps have helped. Their social behaviour is severely exaggerated so i notice it better than RL. Neighbours taught me that loving couples (or dating ones) need to have some time alone (i dont mean the bedroom but just not being a gooseberry). Other soaps have taught me it is natural to feel the way i do about things. i cried for a rare occasion when Stacey was sectioned in EastEnders it reminded me of how my friend might have felt at the time of his sectioning. im not afraid to ask questions and work on the motto of "the only stupid question is the one you dont ask". im on many autistic internet forums (quite new to the scene really only last 4 years). i ask questions about social behaviour on there and also with trusted family members and support staff. Have you tried to find a NAS run social group in your area? http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=2176 for details of one in your area. If you get stuck let me know and i will try and find the nearest one to a town you ask for. http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1348 is the NAS section on diagnosis. Some autistic folk have problems accessing their memories and i happen to be one of them. Also social situations can be very overloading for autistic folk. In Bristol we have a quiet cafe group but im not sure if any other social groups meet anywhere other than a pub. Knowing how to start or end a conversation is also a problem for us. Email the autism helpline to ask who can diagnose adults with aspergers in your area www.autism.org.uk/enquiry the ADD can be much harder to diagnose since authorities dont think it affects adults. i know almost as many ADD adults as asperger adults and many have both. Ask the NAS for an e-befriender? Also try some books like "how to be yourself in a world that's different", "what is asperger syndrome and how will it affect me?" or even "the complete guide to asperger syndrome". Good luck and let us know how we can help. (by asking questions) Alexis

Im the opposite, except for people falling out i love xmas. i have to know beforehand what to record on sky +. i have to watch top of the pops before xmas lunch. im very upset about people being more than 15mins late. Folk have to obey the rules in games. i think of it as everyone elses birthday. Oh and theres 3 social group meals to look forward to as well! Alexis

Sounds like sound or temperature is bothering him. Cutting out aspartame in your sons diet could help with this. i had speech therapy in 1983 age 3! Thats still playing in a way since hes controlling the predictability "if i tip this up the toys will fall out", "now im going to fill the box so i can tip it up again" i expect would be his thoughts. Desire for sameness is across the spectrum. i watch about 3 episodes of star trek per day. Lately ive been more selective of which episodes im going to see. Also i take 2 of my playmobil figures into the shower with me for company. Hope your review meeting goes well. There are some books on ASD behaviour, "behavioural concerns and ASD" is one example you might find useful. Another book is aimed at asperger kids in the classroom but can still apply to autistic ones "asperger syndrome practical strategies for the classroom". Alexis

Low self esteem is when you have a very negative opinion about yourself. Pride is self importance but not necessarily high self esteem. Anxiety is being restless, jumpy, fidgety, panicky all the feelings that make you feel uncomfortable in situations particularly social situations. Alexis

Hello Wasn't the 17 year old tourettic? Im surprised it wasnt mentioned in the program since stress can cause the tics not autistic behaviour. Alexis

http://www.bbc.co.uk/iplayer/episode/b00nt..._is_Not_Enough/ If you missed it watching on I player at the moment

In 2 years time he will be old enough for NAS out of schools clubs. In the meantime would befriending be a possibility for him? What about disabled swimming if it happens in your area? Contact your local NAS for details. Alexis

i know one autism tutor who thinks autistics should be excluded from PE and games as the pressure to be so co ordinated (and the embarrassment of "do we have to have him" situation) is too much for us to cope. Personally i would have liked to do my own thing supervised by a sick student my age rather than the team games stuff. Alexis

i always record X factor because when i watch it back i can do mini chores during the adds

If you think of it as a behavioural seizure that could help. His brain is literally reacting to the bombardment of sensory and other over stimulations happening to him. Severe meltdowns in me (more than 3 a week) indicate severe depression. Not sure if Help! mentioned this but......anger is often expressed when depression is the cause (tony attwoods complete guide to AS). Rumbling stage is hard to detect as it can be so subtle, it could be something as simple as more frequent interruptions, gradual increase or decrease in tone of voice, to rocking, making a sound to block out other sounds or going very quiet just before they blow up. When my short term memory problems were treated (b6, right type of fish oils (accidentally had ones with gluten in), taurine (anxiety increased short term memory wipes), 5htp, mag, benzoate free), then my meltdowns decreased. Coming of the liquid risperidal was the best thing i did. Alexis

Welcome to the board Im pleased you found some answers for your son. Despite having severe motor clumsiness (i think im dyspraxic as well as aspie) ive never been offered help/support for this. Some things that have helped with my co ordination 1, fish oils EyeQ is best and ive heard parents mention its the least reactive in their kids 2, trampolining (if hes not too big you didn't mention his age) then a small exercise one 3, avoiding gluten (this depends on the person but for me when i have gluten in my diet im more poorly co ordinated ive heard that "brain gym" is good and also books about sensory problems. He has what's known as proprioceptive problems, he cant tell where his body is in space compared to other things. Alexis

Strange as it might seem but strawberries motivate me to get moving in the morning. They help with low motivation depression. Alexis

Justine my mum refuses to try and get a diagnosis as she wont accept she could be AS. Last night whilst i was staying around at her house she walked into my room without knocking and started talking to me when i was under the covers in my bed lying down. If thats not AS behaviour i don't know what is? Seems to be unfortunately common for domestic abuse (including the hidden mental and psychological types) is rife in autistic families. My dad was a nasty asperger who had to be worshipped no matter what he said. He was an alcoholic and very mentally abusive to all of us. He ran my mum down in front of us and she is starting to exhibit some of his behaviour when she drinks. i just dont know what to do as his behaviour still affects our family 11 years after hes died i think the word you are looking for Nats Mum is "a connection" you have formed a connection with your son due to both being autistic. In some ways i have a similar connection with mine due to our shared autism. Alexis

Welcome Nats mum Im an asperger with other stuff and have to force myself to go out sometimes. im relieved i have home support as it makes it easier to stay in contact with the outside world. Also i meet my mentor in a RL situation a pub that's busy and sometimes noisy but we move tables when the background overload gets too much. Im going to the Bath big care debate tomorrow. It's a roadshow run by the government, im going to demand answers for those without home support who still struggle at home due to being "ignored or ineligible" (NAS report 2001). http://careandsupport.direct.gov.uk/bath/ for the website to find out more. Im single and live in my housing association flat under a shared ownership scheme. i like it here but im trying to cope with getting used to the fact that my neighbour is going to die soon and be replaced by a new neighbour. Im hoping this new person isnt a bully like the last one. Alexis

Its good you have found an efficient way to communicate with him. My mum just tends to be unapproachable as her reaction puts you off asking in the 1st place. Then you get stuck as she complains that people keep things from her. No it wont go away if you pretend it's not there. it is a part of asperger syndrome to be vulnerable to internal anxiety at higher levels than NTs. i have a similar frustration with myself. ive got 16 qualifications (brother counted them the other day) including a higher education diploma. But im unable to put across a convincing application due to the negativity about autism. It can get better ive found ways to deal with my anxieties and i blow up less and under more stress than before. Alexis

Ah yes over-compliance "agreeing to everything even if untrue" (NAS autism alert card) Would dyslexia count as an auditory processing difficulty? im having problems getting members of our social group to speak up and let social secretaries (myself and another asperger) know what they want organising. i would be really annoyed if i was told "you never organise anything". Alexis

i was diagnosed as AS at age 16 following my GCSEs. i didnt get as many as your son, i also had problems with verbal elements of exams. However i only struggled with English element due to my fear of my teacher (diagnosis was post results). Im the same, i can do it with familiar people but not really very well "on the spot". Something to do with interpreting the intentions of the open questions. Which would explain why i could manage my French and Spanish speaking (didnt have to speak during pottery). i don't think he is aware when his comments could be useful, he might be appearing to listen to the conversation. If you have asked direct questions about the appointment afterwards then hes listening. We aspies can find ways of appearing to listen so we're not picked up about "not listening". i can see what you mean as unless you compare his AS to another quieter AS lad of similar age you aren't to know. That isn't a failing in you as a parent, you have noticed this problem in your son communicating and that makes you a good parent as you wish to find out more to help him. Does that include if they visit the house? Most asperger teens can be like this, however you would expect him to interrupt conversations or accidentally talk over you sometimes. This sounds like something called "selective silence" (selective mutism). It's an extreme form of social anxiety which causes problems with being able to speak when he feels under stress. That doesn't mean anyone else is putting him under stress just that he has a lower tolerance to stress than non selective silent folk. Im not sure but i think it's related to social phobia. Your son literally cannot speak under certain situations due to his overpowering anxiety and poor self confidence. Most autistics have poor self confidence. You haven't caused this to happen to your son but you can help him overcome it, Tony Atwood briefly mentions "selective mutism" (old name for "selective silence" as this condition isnt a choice to refuse to speak) in his "complete guide to asperger syndrome". Hard to tell exactly what we do and dont understand due to our inability to predict what information and how detailed that information is to be fed back to the listener. i have the same problem, accessing my autisitc memory is very frustrating. For me i think its connected with my dyslexia (so i misremember stuff). Nowadays i write down anything someone wants me to pass on (better still ask them to tell the person themselves so they know that person has the information). im not always the best relay station for people which is why i prefer written and typed communication. He would be anxious with public places like school, college, the local pub, shops etc. He might not recognise anxiety in himself. Alexis

I'm pleased your daughter is doing well in her pre university course Kathryn. i read a book called "not stupid" about some parents that set up their own school for autistic's in the borough of Hillingdon Manor. Also heard there is an ASD school in Milton Keynes. They had 2 kids at either end of the spectrum and are oversubscribed. Found the book in Waterstones after reading an article about it in a newspaper sometime ago. Tell us a bit more about Sebastian? Do you think he would benefit more from an ASD, special or mainstream school? The NAS have schools in the UK for autistics one of which is on their website at http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=138 address. Called Sybil Elgar School. Advocacy for education service details are on http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=143&a=9995 also run by the NAS. In case you hadn't heard the NAS is the leading charity for autistics and in the UK. It does campaigning and is gradually expanding to include more views of autistics. It runs an employment support scheme which I've heard is very good for some autistics and unsuitable for the higher intelligent ones. Joining them might be an idea as you could get the last copy of Communication magazine which has ads in there for autistic schools and other strategies for living with autism. Alexis

i wish i could get OT support but i think it's unlikely at my age, at least before the autism act comes into place. After 4 years of being gluten and dairy free i was able to eat garden peas without feeling like i was eating grass. Alexis

We are only happy to help. i didn't get tested for dairy and gluten intolerance, i just went gluten and dairy free and waited to see what happened. He will appear to regress post gf/cf for a short time then things should level off depending on his age and intake. If you removed his chocolate powder then he wont be tempted to drink the milk. Does he sweat buckets? Does he seem hyperactive or zombie like? The gastrointestinal upsets sound like he could benefit from going gluten and dairy free. Ready break could still be gluten but if you remove the milk 1st it will take a few days for the milk and a few months for the gluten. i guess if you watered down his juice he would notice? Good luck and there is a section on diet and vitamins on this site. Alexis