trekster

Hello and welcome i find it disgusting the way you and your family have been treated regarding the diagnostic assessment for your daughter. After shes been assessed and you have seen the report i would write to PALS to complain about the distress you and her have received. The assessor will ask you questions about your daughter when she was a child, milestones, interacting with others, sleep issues, how she behaves when you change something without warning and/or explanation. Then they will ask your daughter questions testing her for the main features of autism/aspergers. http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx There might be a parent/carer branch of the NAS near to you as well, see if they have any tips on approaching diagnosis. i had to wait nearly 2 years to get an assessment and diagnosis of my aspergers, the accompanying mental health diagnosis of CPTSD (relating to my abusive childhood) was only recently recognised, they used autism as an excuse not to assess me. Really hope you can find some answers at assessment.

Yes as there could be children viewing these forums.

it's a government backed scheme https://www.gov.uk/access-to-work/overview

hello and welcome Could you ask for a job coach or mentor via the 'access to work' scheme to help you manage your anxiety? http://www.autism.org.uk/news-and-events/news-from-the-nas/nas-responds-to-access-to-work-report.aspx

i really enjoy my volunteer work and they value my contribution. im sorting stamps for oxfam and as a collector (bristol shop is one of a few who wish to specialise in stamps) they value my input. i even take the stamps home to sort :-) What sort of interests does your daughter have?

The only thing that helped me was going off gluten and dairy altogether. Then I added supplements like omega 3 mag and b vitamins 1 per week to see whether the changes were worth it. my anxiety is a lot less now I'm off gluten and dairy and also most medications. Also meeting other as peregrines folk has helped me regain my self confidence. I've just been 2 see a film with 2 of my friends.

If he's better able to explain the bullying though with meds they could be taking him more seriously. Also if hes able to concentrate better the bullying may reduce if thats why hes being picked on.

My heart goes out to you coping with 3 spectrum children. When my depression was severe, i was self harming and wished i was dead 1 thing saved me. Very low dose risperdal, it's an anti psychotic and i can only manage the orodispersive (melt in the mouth) tablets. This was before i realised i had been glutened by some of supplements. Does he have a statement of special educational needs? Could he go back on concerta at a lower dose? Or on a slow release ADHD medication? Gluten and dairy fuzzles my brain up and i cant concentrate or think clearly, strawberries and tonic water clear my head (not neccesarily together) but i cant have strawberries at night as they caused nightmares. Would he be willing to change his lifestyle completly and cut out all gluten and dairy in his diet and non food items? Some kids especially the ADHD ones react also to colours and dyes in foods basically the nasty artifically created additives. There is a great book i highly recommend written by a parent of a few spectrum lads "multicoloured mayhem" by jacqui jackson. Also i think theres a NAS parents support group in bedfordshire would any of them recommend a different more understanding school for your son? Is it possible your husband is on the spectrum and projecting those feelings onto his son? My mum does this sometimes. They might also recommend a respite service so someone else can look after your child(ren) when you need a break.

Good to keep your options open and house for 55+ tends to be bungalows :-)

Hello and welcome In order for a behaviour to be defined as bad there has to be intentions of being bad behind it. Autistics dont understand others points of view (hence my objection to 'things not going his way') at times vice versa. i do however agree that consistency is the key to prevent confusion which in turn can lead to more anger. i used to get angry because i asked "what would you do if i did x (action)?" the answer was "i would tell you to stop". i did the action during a meltdown and he didnt tell me to stop getting me even more upset and wound up. This was an autism professional who wasn't consistent and often told me he wouldnt or would do certain things then the opposite happened. You mentioned a speech and language problem in your son, what alternative methods of communication does he have apart from speech? i use cards when im stuttering or cant explain what im trying to tell someone. Anger can be a sign of anxiety and can be triggered by almost anything, change in routine, new school, new teachers, even new shampoo or washing powder or formulations in medications, food and non food stuffs. i had a few meltdowns before realising gluten had been added to my b vitamins. i almost got excluded on mental health grounds from university because i was so wound up. Removing the b vitamins from my diet had an immediate calming effect. No amount of reward and punishment system would have worked for me at school i must have annoyed the teachers because i enjoyed the 'boring' jobs of detention. If he will read books there is a book called "when my autism gets too big" which is aimed at educating autistic/asperger kids about anger. hope you find something useful in my post.

I know you are unsure about moving but if there was a different housing association which understood autism and had adaptable properties would you move there?

i was wondering if he could be unwell as i think your the parent who mentioned about a hidden ear infection causing him to be upset? Hope your able to have quality time with him when you see him next.

i got upset during an assessment today because i was asked "do you react in a normal way to pain?" my response was "theres no such thing as normal". The assessor tried to reword the question "high or low pain threshold" but i was thinking responded with "no such thing as normal". After asking me the same question again and again 3 times i finally said "i cannot answer the question because if normal is saying ouch then anyone who grins and bears the pain isnt reacting normally". The question said "in a normal way" which implies theres only 1 'right' way to react to pain. Also talking about pain is a CPTSD trigger for me which i couldn't say at the time.The questions were vaguely worded so i couldnt answer them. i was scared of answering them wrongly (and then wouldnt be able to change the result because i said something that was misinterpreted) another CPTSD problem. i wasn't told i couldn't do woodwork there so im presuming i can Also they hadnt seen a copy of my care plan "because you can probably state what you do and dont want". i was angry at one point partly at some of the terms used "can become challenging (as i associate this with services giving up on me). Saying that i do agree with the work the 'challenging behaviour foundation" does. John Clements mentioned in a talk about his book "people with autism behaving badly" (i know the title can be off-putting but he sees the situation from the spectrummies POV about the system being flawed), "95% of challenging behaviour in autism is caused my being unable to express pain. An OTC course of painkillers for 2 weeks then doing without them for 2 weeks can often resolve the issue" because in the 2 weeks without the painkillers if the behaviour returns then it is likely to be pain related. Does he accept alternative ways of saying angry, eg upset, confused, muddled, down or sad? im pleased my post is helping you and i feel the teachers attitude and the lack of adequate CAHMS support is disgusting. Would writing to your MP about the poor CAHMS support be any use? A relative of mine had to do this as a last resort (it was her 28th letter in a matter of months) to get me counselling. im still i will be pleased when certain teachers from my secondary school retire as they bullied and humiliated me in front of others, all due to preconcieved ideas of what is acceptable.

By flexibility do you mean flexible joints? If so try the beignton and brighton scores and see what you get. Elhers Danlos syndrome type 3 and hypermobility syndrome (argued to be the same thing in lots of cases) is a genetic disorder. http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx The Beighton scoreThe Beighton score consists of a series of five tests, the results of which can add up to a total of nine points. The score is worked out as follows: one point if you can place your palms on the ground while standing with your legs straight one point for each elbow that bends backwards one point for each knee that bends backwards one point for each thumb that touches the forearm when bent backwards one point for each little finger that bends backwards beyond 90 degrees If your Beighton score is four or more, it is likely that you have joint hypermobility. The Hypermobility Syndromes Association has images of the Beighton score tests, if you would like more information. The Brighton criteriaThe Brighton criteria take into account your Beighton score, but also consider other symptoms, such as joint pain and dislocated joints, and how long you have had them. There are major and minor Brighton criteria. Major criteriaThe major Brighton criteria are: having a Beighton score of four or more – either now or in the past having joint pain for longer than three months in four or more joints Minor criteriaThe minor Brighton criteria are: having a Beighton score of one to three, or having a Beighton score of zero to three if you are over 50 years of age having joint pain for longer than three months up to three joints, back pain for longer than three months, or spondylosis (spinal arthritis) or spondylolisthesis (where a bone from the lower spine slips out of position) dislocation or partial dislocation of more than one joint, or the same joint more than once having three or more injuries to your soft tissues – such astenosynovitis (inflammation of the protective layer surrounding a tendon) or bursitis (inflammation of a fluid-filled sac in a joint) having particular physical characteristics called Marfanoid habitus – this includes being tall and slim and having long, slim fingers having abnormal skin – such as thin and stretchy skin having eye-related symptoms – such as droopy eyelids or short-sightedness having swollen and enlarged veins (varicose veins), a hernia (when an internal part of the body pushes through a weakness in the surrounding tissue wall) or – in women – pelvic organ prolapse(where the organs inside the pelvis slip down from their normal position) According to the Brighton criteria, JHS may be diagnosed if you have: two major criteria one major criteria and two minor criteria four minor criteria two minor criteria and a close relative, such as a parent, who has been diagnosed with JHS

Do you buy him things because he asks you for them? If so does he know to say thanks when he receives them? i dont like people doing favours for me without me asking unless it's mkaing dinners or cups of tea (as mum does when im studying). Although im quite verbal i still have communication cards to help me. i used to get angry at people for stopping me going to the toilet. i didnt know they werent aware i needed the toilet or could forget. A card saying "i need a bathroom break" means i feel able to go to the toilet when out without getting angry at people. Could he be angry at his dad and is taking it out on you? Im wondering if the book "when my autism gets too big" (an anger self help for autistic kids) would help? For me anger is normally a sign of depression of false guilt (which ive got from CPTSD). Anger can be caused by being unable to express pain as is also true in my case. Benzoates in anything food or none food turn me into a monster with anger issues. Gluten and dairy can also cause behavioural issues. Have you tried CAHMS so he has someone to talk to about what happened with the bullying as that could also be causing his anger? Is there anything in particular about the child he was talking with that could be replicated at home eg subjects they discussed? Could also be anxiety http://www.autism.org.uk/living-with-autism/understanding-behaviour/anxiety-in-adults-with-an-autism-spectrum-disorder.aspx Theres a book for parents called "autism understanding and managing anger". Hope this helps

The autism degree i did was distance education you do the work at home and email it in. Theres 2 optional residential study weekends which are full board and held in a hotel. Theres also disabled students allowance which can help pay for equipment, supplies and mentoring. There tutor groups but you can opt for an email only tutor group.

http://www.rcgp.org.uk/clinical-and-research/clinical-resources/autistic-spectrum-disorder.aspx Resources for people with autism and their carers Making the most of your visit to the GP: a guide for those on the autistic spectrum [PDF] - a resource for people with autism and their carers to make it easier to access their GP Going to your doctor - an easy read version of the guide [PDF] 'My hospital passport' - developed by NAS to help people with autism to communicate their needs to doctors, nurses and other healthcare professionals [PDF] 'My hospital passport' guidance to assist in completing and using the hospital passport [PDF] What is autism? What is Asperger syndrome? What next? Information for adults with autism before and after diagnosis After diagnosis: information for parents and carers of children with autism All about diagnosis Policy and guidance Autism Act, Strategy & Statutory Guidance NICE Quality Standard, QS51 Autism NICE Pathway, Autism NICE clinical guideline 170 Autism: the management and support of children and young people on the autism spectrum NICE clinical guideline 142 Autism: recognition, referral, diagnosis and management of adults on the autism spectrum NICE clinical guideline 128 Autism: recognition, referral and diagnosis of children and young people on the autism spectrum Resources for GPs and health professionals Information for general practitioners from The National Autistic Society (NAS) A GPs guide to adults with Asperger syndrome Patients with autism spectrum disorders: guidance for health professionals Posters for GPs surgeries Learning resource on autism spectrum disorders from NHS Education for Scotland Top tips for diagnosing, support and meeting the needs of people on the autistic spectrum - Dr Y Delargy-Aziz, Leicestershire County Council Training resourcesAsk Autism: online training ArticlesDr Carole Buckley, Clinical Champion for Autism, talks to the BBC about the priority.

I have tried a number of things to try and eliminate some of my autism. Chelation is quite a contentious issue but all I can say is it helped me and im aware of others who found chelation helpful for them and their children. Personally if someone feels they're suffering as a result of being unable to cope with their ASD they should be allowed to try a cure. If they are happy in how their autism affects them and it causes no distress to others I don't feel it is morally right for them to take a cure. For me no gluten, dairy, benzoates, low aspartame, low msg and low soya have helped my autism. I can now express pain and certain supplements have helped with depression, cognition and to an extent my physical pain. That's being strict and also making sure non food items eg don't lick stamps as they have gluten in them are avoided. It is hard but rewarding work. Dairy takes 3 days to leave your system (as does soya which can mimic dairy) gluten takes months. I also avoid pineapple and bromelain for the EDS as it can loosen my joints. Gold MD I find it depends what type of support workers I get, ive had support workers that I refuse to see because we clash and ones who have supported me for years the longest being nearly 10 years this summer. Support workers have to be clear on boundaries, expectations of me and mine of them and what they can and cannot help me with. Changing my lifestyle (prefer to call it a lifestyle rather than a diet) is what helped with my impulsive nature.

The IQ rule wasn't in the latest government paper about learning disability, mental health and autism, therefore it no longer applies.

If the NAS were in bed with the DWP/Government then they wouldn't have written the assessment criterion for the social aspects of ASD regarding PIP and ESA assessments.

Also you get assessed based on your income as to how much you can afford for your care package. So for me ive got to pay a small contribution a week much less than my actual income. Some of the money for carers wages will be paid by the council in your case the rest by yourself. Try emailing welfarerights@nas.org.uk for more information on self assessments. Also theres webpages on the NAS website about benefits and community care. Self Directed Support is what Sally44 is referring to and I was 1 of the people who rewrote the guidance for Self Directed Support. PM me with any questions you have and I will see what I can do to answer them, if I don't know the answer I could know people who do. http://www.autism.org.uk/living-with-autism/benefits-and-community-care/community-care-for-adults/community-care-self-directed-support.aspx http://www.autism.org.uk/living-with-autism/benefits-and-community-care/benefit-appeals.aspx Sorry if ive already asked but have you been checked for orthostatic intolerance? http://en.wikipedia.org/wiki/Orthostatic_intolerance Also for the pain either fibromyalgia or elhers danlos syndrome (EDS) spring to mind. I ask because EDS and fibromyalgia are common in the autistic population. Particularly the "My skeleton can not support/cope with the actions of my muscles. Very depressed recently as my elbows are now giving problems, this makes using a wheelchair difficult." Do your joints feel loose? Could you do all sorts of strange overbending movements with your joints when you were younger? Do your elbows hyperextend or your knees give way? http://en.wikipedia.org/wiki/Fibromyalgia http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome Hope im not overloading you with this information but mention to the NAS a) the problems you're having getting your physical disabilities recognized and the problems you're having getting community care including problems with mental health services. There is a NAS branch in west Berkshire contact details are below; Kate LoBranch Officer Tel: 07748 880725 Email: westberkshire@nas.org.uk Hope you find something useful in my post.

Congratulations you are officially an aspie :-) If it helps I had to wait over 18 months and I was self harming, having nightmares, panic attacks (about the associated trauma unrelated to the aspergers) at the time of my diagnostic assessment. Taken another 20 years but I can finally see the "light at the end of the tunnel". You might want to contact Autism West Midlands or another type of organization in your area who could recommend a psychiatrist who understands AS. I got my BPhil in autism from the edgbaston university of Birmingham which is how I turned my diagnosis (and subsequent denial by my parents) into a positive.

Can you go to relate? They've some experience in helping asperger folk in relationships.

Welcome from a lemon grey tea drinker ;-)

Hello and welcome, hope you manage to find some help understanding your diagnoses. i found the book 'multicoloured mayhem' to be my favourite in explaining autism and adhd.