asperger disorder.

[Tiff]

i have just joined mumsnet and read some of the discussions with interest. My son is now 8 years old and although we knew from birth things weren't right he has only just been diagnosed with ADHD, asperger and dyspraxia. It took years of seeing child psychiatrists (who blamed bad behaviour), psychologists(dsyfuntional family) before i finally had to go private. I took him to see a paediatrician who finally listened to all i said and made the diagnosis.
my son has been put on medication and although it is early days we are noticing a difference. i realise that not every child needs the medication and some parents are reluctant to try it, but my believe, when you have a child like that is to explore every option.
we have found that as far as diet is related he has to avoid 'E' numbers especially colours and we have started to look at organic foods very closely.
I would just like to tell parents going through hell with a challenging child, Don't GIVE UP, at the end of the day only you can fight for your child.
does anyone else have any experience of a child with multi- conditions or asperger and if so do they have any tips they would like to share, also if you just want a chat after a bad day, get in touch.

JIMJAMS>>>MELATONIN prescribed by paed thats diagnosed the ASD .
if you want more info- ask me!,,,but in short- only available on prescription by specialists (not usual GP etc) pharmacy has to have the prescrioption B4 they order it in- as is on a 'named patient basis'- still cant believe how well it works- tom asks for it and on odd nights when we forget to give it we have exactly the sam behaviours we had B4 however generally he does seem to settle B4 midnight but fidgets the same as B4- the irony is that my 6 yr old (not diagnosed ASD ....yet!) has began having the same sleep probs and i have requested he be obserxved for ASD by paed as he fits the ASD descripts better- but because he loves the routiones and order at school he only seems to show his ASD out of school- i ended up listing over 20 instances when he has behaved very ASD like and paed agreed to see him- disrequest a home visit but no joy- does annoy me that they insist that if ok at school must be fine- but if probs at school must have ASD- i could list his oddities and go on foprever- but because his eye contact is good and he is sociable- school say alls fine- i recommend tghat if they want a great demonstration of his ASD they need to remove him from activities abruptly,switch t.v off without warning,offer new food,play loud music,break a promise etc- i know all kids hate these things too- but its the degree that he reacts and how long till calmed down-also wondered if you know any great websites to help me through the statementing etc for tom as at school action plus and not getting any help at school despite diagnosis of ASD- thanks

JIMJAMS>>>MELATONIN prescribed by paed thats diagnosed the ASD .
if you want more info- ask me!,,,but in short- only available on prescription by specialists (not usual GP etc) pharmacy has to have the prescrioption B4 they order it in- as is on a 'named patient basis'- still cant believe how well it works- tom asks for it and on odd nights when we forget to give it we have exactly the sam behaviours we had B4 however generally he does seem to settle B4 midnight but fidgets the same as B4- the irony is that my 6 yr old (not diagnosed ASD ....yet!) has began having the same sleep probs and i have requested he be obserxved for ASD by paed as he fits the ASD descripts better- but because he loves the routiones and order at school he only seems to show his ASD out of school- i ended up listing over 20 instances when he has behaved very ASD like and paed agreed to see him- disrequest a home visit but no joy- does annoy me that they insist that if ok at school must be fine- but if probs at school must have ASD- i could list his oddities and go on foprever- but because his eye contact is good and he is sociable- school say alls fine- i recommend tghat if they want a great demonstration of his ASD they need to remove him from activities abruptly,switch t.v off without warning,offer new food,play loud music,break a promise etc- i know all kids hate these things too- but its the degree that he reacts and how long till calmed down-also wondered if you know any great websites to help me through the statementing etc for tom as at school action plus and not getting any help at school despite diagnosis of ASD- thanks

thanks mrsforgetful- we could have done with melatonin on holiday- ds1 didn't go to sleep before 11pm any night!

The best place for statementing advice is IPSEA- they have a website. We are in the middle of a battle with the LEA at the moment overthe statement- and IPSEA have been great. The NAS also run an education advice line - a friend said they were very good.

Don't know Mumsnet protocol on posting interesting info to more than one section? I should post this to SEN and Media I suppose, I'll see if I get time......

Sixty Minutes is US TV prog. This is a link to this item with an option to view video. It looks interesting.

sixtyminutes.ninemsn.com.au/sixtyminutes/stories/2003_07_06/story_888.asp

My ds is 7 and diagnosed with high functioning autism. We noticed something at the weekend and was wondering if anyone else has come across it. We were walking up a busy street and ds as usual kept getting annoyed at "people bumping into him". This has always been an issue, particularly in the school playground. He has ok-ish balance but would get knocked over slightly more than 'normal'. Anyway, it occured to us that he seemed to be having problem judging spaces between people to get through and was getting extremely annoyed. We had never noticed this before, but my question is - is judging of distances an HFA thing?
DS also explained his handflapping at the weekend. I had often wondered if kids at school commented on it and on Saturday he said that if someone asks him why he does it, he justs says he does it because he is happy. He was completely unconcerned that anyone felt the need to ask him about it! I was so pleased as I always worried that it made him stand out. A very happy moment for me as he is normally an EXTREMELY sensitive child! One less thing to worry about him coping with! yippee!

By the way, I was told by ds paediatrician when she first saw him at 18 months when I enquired was it autism "Oh no, couldn't be, as he gives too much eye contact". I always felt eyecontact was slightly off (and now having 6month old confirms it for me), but because it wasn't completely off, she missed it. The professionals are sometimes so bogged down with the 'norm' display of disorders that they go way of the mark!

Sorry gone on so long - would be grateful for any views on judging distances, please!

Hi Rebi- my autistic son has just had a big assessment at BIBIC. One of his main areas of difficult was depth perception and judging distances. We knew he had a depth perception problem as he frequently tries to throw himself off placs far far too high. He also doesn't like moving between different surfaces- eg carpet to lino.

BIBIC have given us quite a few exercises to do to improve this. Swings. Put on swivel chair turn slowly in one direction for 30 seconds, pause for 10 then back the other direction for 30 seconds. Balance beam. Stepping stones- different sized tekephone directories etc wrapped in brown paper to step between.

Is your son dyspraxic as well? Ours is and we've been given more stuff to do with that.

I have Aspergers Dysorder and I'm Dyslexic. Also 40 years old with 4 children. One has Autism.

The things that i have found worked great with us is GF/CF diet. Cranial Sacral Therapy. Chelation for heavy metals. Cod Liver Oil. Organic Food. Multi-vitamins.

I have pulled my son up from "severe" to now PDD.

A good book about growing up Aspergers was written by Claire Sansbury...called Martian in the Playground.

Here are a few links to help you on your search for HEALING your child. Good luck on your quests.

www.gfcfdiet.com

www.megson.com

www.latitudes.org/

groups.yahoo.com/group/Autism-Mercury/messages

Thanks Jimjam for replying - I think ds's problems with depth perception and judging distances must be quite mild for us to have not noticed before, but now I think about it other little things are making sense.

No, he hasn't been diagnosed with dyspraxia, although I had looked into it before the professionals were giving us any guidance on what the problem actually was. I didn't realise that you could have more than one disorder and it is quite possible that this has been missed. I think I am going to have to do some more research! Certainly I vaguely remember when I did read about symptoms etc. of dyspraxia (over 4-5 years ago now) that I did think it was possible. Food for thought. Thank you.

How old is your son?

How are you finding the summer holidays? My son started his two weeks ago and already he is struggling. Why oh why oh why is there no provision made for children with high function autism / aspergers for the summer holidays, when it is so well known that they need extra support and love their routines? Ds has to go to my work summer scheme (I work mornings) two days a week and he is so upset when I pick him up. My dh thinks we should continue sending him, as at 7 years old he does have to learn how to cope in the big bad world. I am concerned though that his confidence will be badly shaken by the experience? But then agree that maybe we would be doing him no favours by wrapping him in cottonwool either (although that is what I would love to do)?

I spoke to the scheme leader and she says that yes he does have a few hiccups over the 5 hours he is there but that the majority of the time he seems happy enough. At school he has a full time classroom assistant, so he is very unused to not having extra support. Maybe this is a good way of introducing a bit of independence?

Sorry for going on! Any opinions gratefully received!

Often paeds won't diagnose dyspraxia with AS as "all autistic children are dyspraxic" (we were told that). A lot of HFA children are quite clumsy and some experts include that as part of the diagnosis for dyspraxia.

We don;t have a holiday problem as ds1's nursery runs over the summer. A new scheme has been introduced down here paying for a one to one support to allow ASD children to access playschemes etc. Could be worth enquiring about that- or seeing if they will start one in the future. If he hates the playscheme I would be wary about sending him. Sometimes I think to a certain extent AS children do need to be protected. They can't just tough it out like their NT peers. Do you have an alternative that he would be happy with?

hi Jimjams
If we could get him one-to-one in playschemes would be fantastic, but am quite sure nothing like that available here (Northern Ireland). We're finding it hard enough to get him speech therapy, as he is in mainstream education and it is only available if he attends special needs school! Although we are fighting for it at the moment.

I had considered asking his classroom assistant if she would be interested in supporting occasionally over the summer, but obviously would have to pay her and to be honest we don't really have the extra money (His DLA goes on individual swimming and tennis lessons).

This summer I don't have much option but to send him to the scheme and next year maybe take some time off on the new unpaid parental leave entitlement. Again, money is an issue though!

I do find that if ds stays home all summer (as he did last year - I have just returned to work) he regresses quite badly. That was one of the reasons I thought the summer scheme might be a good idea.

Oh I don't know! Can't do right for doing wrong!

I think he needs a statement! Then his SALT can be written into parts 2 and 3 and then they'll have to provide some. (I think the system is similar in N Ireland although not sure).

There is a very good support group in N Ireland- I think it's called PAPA. I did have some of their literature (dh is from N Ireland and MIL picked it up for me). Probably worth contacting them. I'll see if I can find their contact number.

Believe it or not he has a statement!! Has had since he was 4 yrs old. He has a full time classroom assistant at school (we seem to be very fortunate in this, a lot of people at the support group I attend only have part time).

He received fantastic Speech and Language and Occupational Therapy until he was 5 years old, as part of the preschool service available, but once he attained that age the Board area we are in has no facility available for children in mainstream (except for a consultation service for teachers, which we found was on no use to anyone). Before he began school his name was down for a Speech and Language Unit in a Special Needs School, but there was no place for him when he started school. Once he had his first year over and he had settled, after much work from a fantastic teacher and classroom assistant, we asked for his name to be removed from the waiting list as we felt it was more important for him to be settled and in a routine and accepted in his school. What we didn't realise at the time was when they said there was no therapy available outside of SN school, they really meant NOTHING!

Anyway we are fighting at the moment for something to be introduced and hopefully this year will get something sorted. I have recently started working for the Dept of Education, so have started to understand how to go about getting things done in this bureaucratic minefield.

By the way, I was told by the Board's Special Needs Department that if the therapy wasn't available they were not obliged to provide it!!

I have been a member of PAPA for a number of years, they have a fantastic library. The group in our area was plagued with problems and closed down though. Recently an independent group has started locally (started by a behavioural psychologist in the Service) and it is going very well. We are all empowering each other in connection with Statements, etc. In fact when I rang recently and spoke to the Advisor for Schools of Autistic Spectrum Disorders (or some such title! - lovely lady, with far too big a workload) asked if I was attending the group!! I think we are all becoming far more vocal because of the group!

Anyway, thanks a million for your replies. Its good to bounce off worries. Your thoughts that we should maybe not send him to summercamp has been very helpful in getting my dh and myself to debate the issue! Again thank you. I just wish there were easy answers.

Hi,
I´m new to this site and I would like to tell you about my almost 5 year old son. I´m looking for help, and need some oppinions on what to do next.
My son can have one of two extreme reactions in social situations; (1) He may be very friendly and overly excited to have new people around, and actually give these people kisses and hugs, or (2) he will have an anxiety attack because there are people aroud, or because they´ve touched him or even just because they´ve spoken to him, he will scream loudly run into a corner and crouch covering his head. No one here in portugal seem to take me seriously when I say I thing«k my son has a problem. the teachers and psychologist at preschool say that he´s fine there and that he must just be misbehaving outside of school to get my attention. I´ve been to a private psychologist and child psychiatrist and they both tell me that my son just has a strong personality and he just wants to be in demand... that we´ve been too easy on him and we can´t let him get his way... it´s just a behavioural problem.
He certainly does have a strong personality, but the truth is he spend a good part of his life in time out because of his overeacted tantrums, and when he behaves this way he certainly doesn´t get his way. He is very precise about the way things should be done and if not done in his precise way he flips... he has a very low frustration level and also reacts badly when traveling in the car to a familiar place and we don´t take the familiar route. He´´s also overly sensitve to smells and loud noises though he spends most of his life either screaming and laughing of joy or screaming and yelling in anger or terror.
He has a strange way of showing joy in that he jumps up and down laughing like daffy duck shile flapping his arms. Eg. this morning I layed out and outfit with a t-shirt that wasn´t the matching one to the shorts. When he went to dress himself after calling him a million times he said "mom I want the t-shirt that matches these shorts".. ( I could have expected a very negative or a very positve response from him ).. I told him it was washing but that the one I layed out was really cool, he began to jump up and down in joy flapping and laughing like daffy , hugged me and said thank-you for bying this cool shirt...and proceeded to laugh and jump while dressing.
I have about a million or more examples of very negative or very positive behaviour.
He also has an extremely good memory and has always had trouble sleeping... never seems to be tired and in the morning wakes up early and wired.
Always full of energy...
I´m not exactly sure what more to say.. all that I know is that I´m atarting to feel helpless and just don´t know what to do anymore. I´m starting to feel that I must have done something wrong.

Hi Jackie- I agree with everything maryz has said. (my 4 year old has autism) It sounds like your son could need further investigation. Are you able to get to the UK or US- you may have more luck with diagnosis there. Elliot house run by the NAtional autistic society diagnoses- and I know they work with people abroad so it could be worth contacting them.

Are you in Portugal for the long term? It might be worth finding out what help is available locally.

If you are looking for an email list to join then Aut-Uk is good for info. There a lot of parents (and adults) with AS there- some undiagnosed. Some people are abroad- they may be able to give you more advice on where to go for help.

Sorry Rebi- I missed your reply earlier. Wow- pre-school services sound good! We should have gone to NI for pre-school (maybe not- MIL!!)!! Pity school isn't so good. (We have similar problems here- govt want inclusion but basically isn't prepared to fund it grrr)

I'm glad you have the support group- they make such a difference. Come and join us in special needs as well

Hi maryz and jimjams,
Thank-you so much for your responses.
I am living in portugal long term and the problem here is finding help locally... everyone i´ve spoken to about this just says that it´s just misbehaviour.
I guess I didn´t explain myself well, at scholl my son doesn´t show any of this behaviour that he shows outside of school. I don´t know if this has to do with the routine at school or if it is true that it´s just misbehaviour...
He did have a very difficult time adapting to preschool ... He took longest out of all the children... and they did notice he was very quiet and introverted (nothing like him at all) He spent most of the two years not interacting as much as the others and only now in the month of July did they notice that he is doing much more social play with his little group of friends. He behaves very well in school ... never acts out or flips about anything ... just quiet.
So with all of this they conclude at school that he´s just trying to get my attention.... could this be true?
I never thought of going to the UK but i coul be an option depending on the length of time I´d have to spend there.
Thanx once again for your advice.

Well its difficult to say without knowing your son but.... It is very common for children with Aspergers to behave quite well at school and then explode once they're at home. School is stressful for them, but they bottle it up and then let it all out when they feel safe (at home). As Mary said some of the things you describe do sound a bit like AS- especially things like the handflapping. The problem is (and it is a problem here in the UK as well) a diagnosis is no use if it is just ignored by the school anyway. That is common here as well. For example I know one boy who was 9 - got his diagnosis of AS, the head said "I don't believe it you're just badly behaved and expelled him!", and certain groups have been working hard here to try and raise autism awareness.

Another option people have taken (and I have no idea if this is a possibility for you- or the situation in protugal) is Home Education. There is a book called "home educating our autistic spectrum children" which describes different families experiences. The majority of the children in the book have AS, rather than more severe forms of autism.

Tha national autistic society website (not sure of address but you can get it easily from google) has quite a bit of info about diagnosis etc- it could be helpful.

good luck!

T.V programme called 'My Family And Autism' BBC2 WEDNESDAY 30th july. Featuring the family of Luke Jackson (age 14) who has also written his own book 'Freaks,Geaks and Aspergers Syndrome' The family has 4 boys and 3 girls and all the boys have Autism.Jackie(mum)and luke have also written a book 'user guide to the GF/CF diet for autism,asperger syndrome and ADHD'- so i expect that will be a subject covered- all i can say is roll on wednesday so i can hopefully show my husband something that will make him believe the diagnosis....i'm fed up of people saying 'but HE doesn't LOOK autistic' - even I used to clasiffy AUTISM as 'child withdrawn in corner -mute- tidy and 'odd looking'- My son is sociable (though not how our world likes it)- chatty (but only about his current favourite topic)-chaotically disorganised - and doesn't 'look' disabled.Every time i watch anything on tv about autism they always seem to promote the classic autism- no wonder people don't recognise Aspergers-indeed my son was 'disguised' by 'ADHD' - no-one told me that Aspergers children can be easily distracted and even untidy- perhaps if i'd known that i would have pushed for diagnosis sooner....

mrsforgetful- have you read freeks geeks etc? It is a great book.

As for the stereotypes - my son has a diagnosis of classic autism- he is very sociable, very affectionate (far more than his NT brother), and I get told all the time that he can't possibly be autistic. It's a pity -people have a very set idea of what consitutes autism (they're very autistic about it ).

I can't wait for the programme- I've known Jackie Jackson for a couple of years now (online!) and I have always been totally in awe of her. I'm telling everyone I know to watch it!

BTW- very common for dh's ot to accept it until after diagnosis. My MIL still doesn't accept it btw (I'm just too negative apparently).

Hi there - I just need to know, more about Aspergers, Autism or "What else it might be" . My almost 4yr old DS who is Down Syndrome - has behaviour issues, yet no one seems to or wants to help me diagnose this. Firstly, he is very social, greets peers, friends, families etc.. with Hello. He can be a delightful, funny at times happy child. BUT his temperament, behaviour can be out of this world. We have been battling bullying of other children for so long now, still the so called professionals are not able to help us. He can gently hug a child, or he can change from being an extremely gentle child to the most aggressive child going. He does have intentions to harm other children, by dragging them to the ground - just like prey and placing his arms around their throats. Of course, we have tried to video it, catch it etc.. but he is clever, crafty etc.. and we are not always there at the right time. He is a screamer - I mean screamer, it blows your eardrums apart. He is very, very busy and touches gadgets all day long - tv, video, microwave, phones, dishwasher, etc.. trying to open doors, climb the stairs - you name he'll try it, light switches are a big one at the moment, plus opening and closing the woodburner door while going!!! He certainly has trouble knowing when to stop his awful intentions of harming other children, the cat etc.. He pulls the wings off butterflys also. He has no fear of pain, loves the woodburner - kisses the oven while it is going, he has been burnt by the iron - but just says, 'hot iron' red and all - I rush him under cold water - doesn't worry him. Can anyone offer me some advice???? He often folds the sheets, or baby blankets, or his own clothes, quietly and nicely - basically I allow all this, just for 5 mins peace. Sorry so long any help would be great

Hiya Bagpipes. I wrote you a message earlier but I managed to delete it - clever me. I'm sorry your going through such a hard time looking for help for your son. It can be so difficult.

I'm not the best at explaining things, but I'll give a go at a very quick rundown of autistic features (Jimjams, Maryz, Davros are far more coherent than me, hopefully they will appear later!) I think that is what you're asking?

there is a triad of features/behaviours which are looked for in autism. Socialisation, communication and imagination.

socialisation - unable to read body language, doesn't learn social 'rules' instinctively

communication - sometimes difficulty with speech development, sometimes pedantic speech. Takes things literally

imagination - example would be would line up cars in order rather than play with them.

Every person is different and doesn't necessarily have all the above. I'm sorry if its not very clear, but hope is of some help. I'm sure one of the more eloquent posters will drop in soon!

Have to run - deadline to meet! Good luck and keep in touch.

bogpipes- it is very common for children with DS to show autistic tyoe features. however I don't think they would diagnose it as a seperate condition. Are you reviewed at a CDC? It would be worth asking whether you can have an appoitment with a clinical physchologist to get some help with the behaviour issues. Another option would be to find out whether your area runs an NAS earlybird scheme. They are meant to only take childrenw ith an actual diagnosis, but i know that meant they have problems filling spaces down here. It might be worth asking whether they would ebd the rules in your case (for example here they have bent the rules to allow school age children access as well). It's a very useful course for dealing with auti behaviour.

Do you get portage? Could they help?

Good luck!