MichelleW

Hi, I just wondered if anyone who attended or ran regular meetings for autistic/asperger children and adults could give some advice. The group is mainly run as a kind of youth club for kids on the spectrum, but we do have some ASD teenagers and adults and as expected some of the parents are also ASD themselves. Now a situation has arisen where two ASD adults have become "a couple" but are making this obvious in front of everyone ( i.e. they are all over each other). Now we understand that it is quite acceptable for ASD adults to choose to have a relationship with each other, but feel that the meeting venue is not the appropriate place or time for kissing and cuddling especially in front of all the children. We are not sure how to deal with this situation in the best way - so was wondering if anyone had any ideas ? Don't want to go into too many details (confidentiality etc) so maybe best to PM me please Thanks, Michelle

It may be worth contacting the Autism Research Unit at Sunderland University. They have been looking into this for a long time and can do intolerence testing (was �60) last time I enquired. I was trying to get my doctor to pay the cost - but no joy so far, so I'm going to pay for both my boys to be tested - and maybe myself. My eldest had severe colic and vomiting caused by baby formula, so I switched to soya which improved, but then weaned him on to yoghurts and milk at 1 year. By 2 he had severe constipation and "leakage". The first consultant just put it down to the autism "the brain not telling the body to go". J was also so easily engrossed in something, he just seemed to "forget" that he needed the toilet and would also wet himself. He has been on movical for years (nothing else worked). But over the last few months he has had fewer accidents and soiling. His worst time was at about 5 years old. I tried to increase the dosage of Movical, but just the slightest increase had the opposite effect, and he made a huge mess in front of his class mates - and the school phoned me to say they couldn't clean him up (child welfare and protection etc. etc.)

Hi, I had a similar situation - my eldest is diagnosed ASD. then along comes DS2 who wasn't speaking by the age of 2, so I self referred him to SALT, and also informed my Health visitor who insisted on doing a developmental check - and she also refered him for a more in depth pediatric assessment. I guess it depends on where you live, but I haven't had much in the way of support or provision. Nearly 2 years later and at the age of nearly 4, I have had to fight to get a statement to get him into special school as the special pre-schools were closed and he has had about 2 hours of speech therapy in 2 years! He also has bizarre anxieties and reactions to changes in routine, he has obsessions with cars and trains and lacks the ability to play imaginatively, and has poor social skills etc. but pediatrician would not "label" him as ASD because he does not fit all the boxes. He has ADD, and dyspraxia and severe speech and language disorder - but she informed me this may not indicate ASD, even though his brother is autistic. The good news is that at nearly 4 he has just started talking - he said Mummy for the first time 2 weeks ago, and hasn't stopped since. It is as if it is all finally slotting into place! And this was without speech therapy and before starting special school. All he has had is as much Makaton that I and Nursery could use - and lots of pictures. So I would say don't worry too much, but do try to push as much as you can for SALT provision and work with nursery to encourage the use of visual timetables, now- next-later boards and makaton as much as possible to reduce frustration.

Yep, I'm going through the cat stage with H. It was a bit bizarre at one point when I was walking around a certain store with both my 2 crawling along behind me woofing (that was the dog phase). And at the visit to the clinical psychologist about H, J was clawing at the door like a dog trying to get out, gave up and laid on the floor! Me and the psychologist just looked at him briefly, ignored him and carried on our discussion about H!!! But now H is constantly making cat noises and licking me and crawls around the house! I'm not sure if it is use of imagination - or just copied from what they have seen, as it seems to be the same all the time, the crawling and the animal noises and the constant licking.

I agree that any report may not give all the facts - and it is impossible to know what options were discussed - but the report just highlighted all my fears together. I personally know of a few cases (different situation though) involving autistic children where SS has been called in because a) someone considered the mother to be neurotic 'cos she was pushing for what she believed was best for her child B ) SS was called in because an autistic child was not eating properly ( I guess most of us have been in that situation!) and c) SS were called in again because another child was displaying eating disorder and behavioral disorders that were put down to the mother (child was privately diagnosed, but went on to get a NHS diagnosis) And my other fear is fighting the LEA and not getting anywhere. I would also hope that a "looked after child" due to occasional respite wasn't perceived to be so because of bad parenting - but I'm not sure if that is the case or not. And that really does worry me!

I watched the report, and had a couple of concerns (well several actually!). As I was considering appealing to SENDIST regarding the fact that DS2's statement is not specific or quanitified, I am concerned that even if I win, the decision could be overturned and I would then have to pay loads of costs - the family had to paty about �45,000 secondly the child appeared happy and settled and made improvements at the school he was at, and the LEA and courts were going to disregard that in preference for a cheaper option. Obviously the LEA had though that was the best place for him or they wouldn't have agreed to fund that school in the first place. Also the parents said that the so called "voluntary" placement of child in care was the only option - and therefore not an actual "option" as there were no alternatives offered by the LEA. So it would appear to me that the parents were being forced to accept a situation as there was no alternative. I personally would not feel happy putting my child onto the "looked after child" register because I have seen where it can go (forced adoption of children against parents consent) which worries me enough that I will not even go to SS to ask for respite. Once in "the system" it is not easy to "get out" and then there is always the percieved view that a looked after child, or child in care is due to bad parenting.

This would depend on the child - J has had 4 years in mainstream with teachers trying to make him independent - saying that it is something he has to learn to do. 4 years later he is no more independent than he was at 4! I see school as a way of providing tools to develop the skills to be able to lead an independent life eventually. Yes, they have to live in a mainstream world as adults, but providing them with skills from experienced and trained staff at an ASD specific school would is more likely to work in the long term. For this reason I would like ASD children to have an automatic right to a an ASD or SL&C (speech, language and communication) specific school and pre-school without the need for the time consuming statementing process. The positive traits of my son DS1 having ASD - I'm not sure really as I don't know many children that aren't ASD! He is kind, gentle, honest really good with computers and has great logical thinking (like myself!) the negative traits I would like to change: his difficulty in communicating especially when distressed. And especially when he is being bullied and told not to say anything DS2 is yet to be diagnosed but I'm sure will be when he gets to the "Right age". his positive traits: mmmm still trying to work that one out! he can be kind and loving and when he licks me like a cat he has me in fits! negative points re his traits: again - the frustration caused to us all by his inability to communicate well and also his inability to deal with change of routine, and the irrational fears of sounds and doctors surgeries (due to printer noise!) and I got awfully wet being licked all the time!

I was also told 10 years, but I wouldn't worry too much about brambles as they should be quite clean! I thought tetnus could be caused by rusty things too ( I stood on very long rusty nail when I was about 12 and had to have a jab ( I guess my parents forgot to renew my tetnus before that!) But that reminds me that I can't remember when I last had one - probably when I was 12! and that was 25 years ago!

Whereas I worry that I might get a letter! I'm so used to not having post that when I do get one I automatically assume it's bad news! Like I got a letter about a hospital test for H and had to read it 3 times before I realised it was his heel prick test result from 3 and a half years ago! Someone obviously forgot to post it!

I agree with JsMum that you have to look at the individual child and look at the reasons and triggers for the behaviour. Also you have to accept that these children are different, and if they have developmental delays or disorders in language processing skills, social communication skills etc. then they are probably delayed or disordered in other mental processing skills such as frustration control and shifting focus and attention etc. For example H is 3 and a half, but probably has the language skills of a 12-18 month old baby. So is it not reasonable to assume that if he can not communicate his needs or feelings, he will respond behaviourly like a 12-18 month old baby and also have other areas of developmental disorder? But he is the size of a 5-6 year old and when he lashes out, you know about it. H still has boundaries, but I come at them from a different angle. For example there were many times where he wouldn't get in the carseat. And non-compliance was not an option. Before I'd spend 30-40 minutes trying to force him in (resulting in me being punched, kicked and scratched and him ended up exhausted and forgetting why he protested in first place). I now just say to him "I understand that you are upset about getting in the car - why is that? I then have to try to interpret his non-verbal gestures and noises and say back to him "Is it because of X,Y,Z?" and get a yes response from him, then negotiate with him - like " J will be upset if we don't get him from school and he will cry and be upset, so what shall we do? How about we get in car first, get J from school then park?" It amazed me the first time I tried it and it took me 5 minutes with no aggressive outburst! I've am also trying to get the two kids to resolve their disagreements this way - and it is making life so much easier. OK, it doesn't always work first time, but time out and star charts never worked for my 2!

Ok, I know it is probably contraversial but after visiting the clinial psychologist with DS2 about his behaviour and then going on to read the book "The Explosive Child" both described what is known as the "Collaborative" something method (I haven't got the book at the moment as I lent it to someone else with an explosive child - with 2 more in the queue to borrow it!) I've been using the method with H for a while, and since using it both myself, his father and nursery staff have noticed a significant difference in the number and intensity of his outbursts. H was pretty much non-verbal and I thought it would be harder with a 3 year old, but now I use it with both kids. It is best to identify triggers and prioritise issues and concentrate on the most important issues first. Then try to discuss the issues when the child is in a calm mood before an outburst or meltdown. if i remember correctly you acknowledge the childs concern and clarify their reasons for concern. You then say something along the lines of " I know you get upset when X happens, but my concern is Y (It's now when you have to think about whether you have a real concern). You then ask the child to suggest mutually acceptable solutions, and listen open mindedly and discuss the different solutions (this is difficult with a non-verbal 3 year old) and you can help the child to generate ideas as long as you are not making them agree to what you want. If a working compromise can be made, then great - but it needs practice. Of course this works better if used pre-emptively (not sure if that is the right word) but it can be used to diffuse an outburst - just acknowledging that the child is distressed and clarifying the reasons can help to understand why the behaviour is occuring - and work to prevent it happening rather than trying to force the child to understand consequences during or after an event. For some children, constantly asserting certain "disapline" methods that don't work (obviously 'cos they don't appear to learn from it and "re-offend") is not productive. I would recommend at least reading the book, and giving it a go. If your current method of behaviour control isn't working, then you have nothing to lose, but lots to gain!

Unfortunately I don't think I'll be joining you this year. Hopefully the weather will be as good this year as it was last. This afternoon was lovely and sunny - so with any luck it will stay till the end of the weekend at least!

Hi, I haven't been around much lately as I've had sooo much else to do. Just realised the meet up is this Saturday, so I was wondering where and when everyone was going to meet up (I'm being lazy as I don't want to scroll back through the last 13 pages!!) Are people splitting into smaller groups straight away?

I know how you feel - I have 2 that are like that. I have also seen a clinical psychologist regarding youngest ones behaviour. The psych only recommended what I already do - and that is compromise. i.e. we wil do this first then you can play playstation or watch tv when we get back. I also find I have to count down - like telling the oldest one in the morning that something is going to happen in the afternon, then again an hour or two before,then again and again, until we are due to go. Wih my 3 year old, I can't do that. Like Friday I said we are going to the beach then dinner - but he wanted to go straight away. Another tool that helps with younger ones is a "now, next and later" visual time table. My DS2 can not comprehend more than 3 things in sequence. So it would be a picture of the car to indicate we are going out, a picture of the place we are going, then a picture of car again to indicate going home. As one event happens, take it off and move the others along etc. I'm till in the process of taking photos of everything we do and go, and laminating them. I then cut them up and bluetack them on to a laminated sheet. I know it is tough when they don't want to go out (or in my case one does and the other doesn't). I wanted to do a beach treck this morning before it got hot - neither wanted to go. So I let them stay at home as we went to beach and out to dinner on Friday, and out to our weekly autistic support group club yesterday evening. Bribary also helps - I got my 7 year old this morning by saying he could play when he got home - the 3 year old by saying he could have a packet of sweets. I managed to get to recycle centre and garden centre with minimum fuss! That was until he (3 year old) saw Tesco and remembered they do toy cars, then another shop that does toy trains (his obsessions!) I have compromised with my 7 year old over the years, and he is relatively easy to talk round now. It makes my life slightly easier, but I still won't make them do things I know they don't enjoy (like shopping!) I don't want to be having to deal with two big teenagers that won't go out at all - and by helping them cope with going out at a young age may help them long term. But helping them cope is not the same as making them do something they really don't want to do. P.S. I have also bought them both a DS to help with visits to other peoples houses - it didn't really work at the time as they were fighting over the games! I ended up buying 2 of each game, and they don't really bother with them now!

What I forgot to say was that when DS2 was assessed by Ed Psyche, we agreed that I would meet ed psyche at DS2's nursery to have a discussion about his findings. So he spent about 3 hours assessing DS2, then an hour afterward discussing what I wanted for DS2, and also what he had observed. We had a very honest discussion (although initially I felt he was assessing me!!). But if you can make an arrangement so that you are in the building whilst the ed psych is assessing your child, with an agreement that you can have a meeting straight after, you may be able to get an idea of what s/he thinks, and what he is likely to say in his/her report