Why did it happen?

[DAS999]

Today I picked up my girlfriend repeat prescription and when she opeded the packet she went mad. They gave her a different brand of tablets they are white with green writing and her old ones were half yellow and half white. I told her its the same medicine just a different tablet colour but she is not having any of it and refusing to take them. She cried and cried and lashed out at me. She did the same with the tin of spaghetti, wrong shapes! Why are things such as small as this causing her to have total melt down? I don't really understand Aspergers or Autism they say she is in between High functioning Autism and Aspergers although alot of people say she is Autistic because she does not have an area of special intrest and has too many trates to be Aspergers. I don't know what she has all I know is she is determined to go to the chemist tomorrow and get the 'right' tablets. What happens if thay don't make them any more? She can't not take them they are important pills for a gut disorder!

I am so so worried about tomorrow. I have one old tablet left for her and thats it. How can I get her to cope with issues like this? She is in total meltdown not tears, humming, pushing me away, not talking. You get the picture. Please help

[spectrumlady]

Hi,

 

This is very difficult todeal with when it's entrenched in an adult. You could try a few practical experiments with her. for instance, a test used for very young children is this. Take a tube of smarties, show her the smarties, then put the smarties in another kind of tube/container and she can see the content is the same. Do this with anything else you can think of to show that it's not the container but the content that is important.

 

I can't guarantee this will work, but it's worth a try. Good Luck

 

Spectrumlady

[Kathryn]

This is a difficult situation. Perhaps if your girlfriend has an understanding chemist they may try to get some of the old kind for her? Assuming they are still available. I have just started going to a new pharmacy where thety are very cooperative and get my daughter's medication specially made up in liquid form, even though it is not commercially available.

 

Or if she trusts the GP she might accept his/her explanation as a medical professional that the pills are the same?

 

As to why she is reacting like this to change - I don't know the answer but I can say my daughter has similar responses to small unexpected changes in her roiutine when she is feeling anxious and fearful generally about the bigger things in her life. When she feels secure she is able to cope better with situations like this - favourite juice running out, favourite trousers not being available to wear etc.

 

hope this helps.

 

K

[DAS999]

She had this sort of test done on her. with smarties! they poured a tube of smarties on the table and then put a pen in the smartie tube and skes her what was in it, she said smatries! she could not grasp that a smarties tube did not have to have smarties in it. Talking of smarties. She use to love them but now they come in a different shaped tube she will not touch them! Strange or what!

Cheers for the idea. I will give it a go but I don't think she will have any of it (but anything is worth a try). When they did the smatie experiment she was most upset and confused when the pen came out the tube. They did another one with water; 2 glasses, one tall and thin, one short and fat. they had two jugs of water both the same with 1/4 a pint of water in each. they put the water in both and asked her which had more in (the answer should have been the same amount in each) she pointed at the tall thin one as the water line was higher. sort of logic i guess!

[baddad]

Hi DAS -

 

It's difficult to offer any sort of advice because autism/as is intensely complex and individual...

From what you've said, It would seem likely that your partner is someone who finds security in familiarity. While this is a common trait in both ASD and AS, the degree varies enormously from person to person, and can also be very situational (i.e. if 'compound' events are involved the unease increases with each event - though they might to an external observer seem completely unconnected.)

I can't say what you should do, but what I would say tonight is try just to help your partner to find some sort of comfort and get some rest. It's possible that in the morning she will be more able to cope with the changes, but if this isn't the case at least you'll both have had some respite from the pressures of the situation...

Regarding her diagnosis - try not to think about it - it really isn't all that important, and sometimes trying to make these distinctions can stop you seeing what's really important: The impact on the individual. If you support her in the areas she needs support, you'll be doing the right thing. If you try to rely on the 'medical models' you'll probably find that half the time you're barking up the wrong tree...

Try not to worry about it tonight... twee, i know, but tomorrow will come whether you worry or not.

Perhaps in the morning you could try, if she is willing, to take the 'visual' element out of this scenario by asking her to take the tablets without looking at them. it is possible that on one level she is aware that the change in the appearence of the tablets is an 'irrational' fear, but that the visual 'shock' overrides that sensible response. Trying to put that into context - someone with a phobia of spiders may be able to completely understand that their fear is irrational, but if you put them in a room with a spider they wouldn't be able to cope with it, because the reaction occurs on a different level...

I really hope there's something useful in there, or that (if not) someone comes along who does have something useful. In the meantime,

Very VERY best to you both,

L&P

BD

[nellie]

Das,

 

Many people with autism dislike change, they like things to be predictable. When your girlfriend is in total meltdown it will be difficult to communicate or reason with her, she is best left to calm down in her own way and in her own time.

 

Approach her when she's calm and willing to talk with you.

 

This is Wendy Lawsons website. Wendy is an adult with autism, she talks about her difficulties with change. Your girlfriend may find it useful too.

http://www.mugsy.org/wendy/index2.htm

 

Nellie <'>

[DAS999]

Thanks to you all.

I'll look at the site and try your ideas.

I'm really sorry to post my problems but I'm 28 and up till a month ago I hade never heard the word Autism or Aspergers!

Thanks again your all stars

[lil_me]

Oh heck I've had this one with my son when they changed meds. Now the pharmacist will mention it before I take the prescription and has had to explain on one occasion to my son it was the same meds, just a different company making it look different, he told him the important part is what it says on the label, so he insists on checking the labels now. My son also won't have smarties any more, or if a packet has 50% extra free of something he likes he won't have it, same with xmas packaging etc, why the heck people can't just leave things that are perfectly fine alone I don't know. This is with a 6 year old so I can't imagine how difficult it must be with someone much older who is so complex to deal with. Explaining (usually by proffesionals helps) and reassuance is the only way of handling my son for us. I would not try to reason with him mid meltdown as it is pointless.

Edited November 10, 2005 by lil_me

[Malika]

Hi

 

From the test you describe it seems that her theory of mind is nearly unexistant may be you could try to teach her an intellectual reasoning using some books with the "Sally and Ann" tests I manage to teach my son using various test for around 2 years and using absurd situations like he would think that I could see him across walls and I use to tell him that I am not superman and do not have X-ray eyes.

 

May be something you could do would be to make some dough for fairy cup cakes separate the dough into different bowl and add some different food colorant to each one and you could eat the different coloured cakes toghether with a cup of tea coffee chocolate what ever you fancy.

 

May be ask her to wear different colour clothes and explain to her that she is still the one you love even if her cloth are differents.

 

Hope something will work but do not get discourage it may really take sometimes before she could make some progress.

 

Best of luck

 

Malika.

 

Some information with this link.

 

http://en.wikipedia.org/wiki/Sally-Anne_test

[littlenemo]

if she really won't accept the tablets try going back to the GP.

 

ask him to tell her the tablets are new, better medication - an improved version perhaps - you could perhaps ring beforehand and explain the situation - you never know, he may have seen this before and know exactly how to handle it

 

I think, knowing asperger anxiety only too well, that she may resist any attempt from you to persuade her - she needs a professional explanation

 

Zemanski

[DAS999]

***Tablet update***

 

The chemist changed them for another make, the make she use to have. They do still make those tablets it just depends on what they can get in. We have come to an arrangement that I will give them 2 weeks notice to get the right brand in.

 

It was still not a plesent trip out. My girlfriend insisted on coming and had mini meltdown in chemist before we had even asked about the tablets. Tears could have flooded the place and humming (with fingers in ears) caused some old women to turn round and say

 

"In my day people like that were locked up"

 

Oh well I guess I am use to comments like that but it still touches a nerve.

 

All in all a good outcome. Thanks for all the support

[DAS999]

Ok I lied, it broke my heart ("In my day people like that were locked up") She SHOULD NOT be locked up.

[smiley]

You (gradually) become immune to comments like that - i promise <'>

[spectrumlady]

Well done you. You should feel sorry for the people that commented - they clearly have very narrow life experience.

 

Good luck to you both

 

Spectrumlady

[barefoot wend]

DAS999

 

I think you've done brilliantly!

 

We all know who are the ones who should be locked up - and it's not you or your girlfriend. Ignore their complete ignorance!

 

Barefoot

[phasmid]

I agree Wend, Das999 you are a ###### superstar. You did everything right, the arrangement with the chemist is exactly what is needed. Simply she hates change. That's pretty clear. Any changes to her routine clearly upset her and the change of tablet was exactly that. I get peed off when they chop and change mine from month to month for my various problems...and I haven't got an ASD (least not that I know about!). If and when you can let her know a change is coming (or 'could be') so that she has time to get used to the idea.

 

You really need some back-up though (not just us). I'd ask GP to refer YOU to a specialist who can answer all the questions you have, which sounds like lots to be honest. By all means ask away but, as already pointed out, just like all us NT bods all those with ASDs are different too. What works for one may not for another. A specialist should be able to answer questions that lead on from each other, which once you get talking is bound to happen.

 

You clearly love your girlfriend to bits and want to help her. I hope you can get that help, for both your sakes. Good luck.

[baddad]

OOOOOOOOOOOOhhhhhhhhhhhhhhhhhhhhh those little old ladies

Hopefully she's got a naughty grandson who pees in her dentures glass every night

Glad it (sort of) worked out in the end. Well done both of you.

 

A quickie - do you know if your girlfriends ear blocking/humming is a sensitivity thing? Some people on the spectrum can't 'filter' sounds, so if they're in a busy environment everything demands their full attention at once. If this is the case, a Walkman could help to replace the cacophony with something more pleasant during periods when she's not directly engaged in the conversation. I mean, when your just hanging about in the queue, the external noises are irrelevent: you only need to engage when you're actually at the counter.

It's not the same, I know, but taking this tip from a greatly missed old forum buddy (hi pooks!), was the start of me being able to get Ben round the shops without him having a meltdown.

 

very best to you both

BD

[Kathryn]

Das999,

 

I'm glad you were able to get the tablets changed - that must be a relief. Sorry to hear that you had to endure such ignorant stupid comments in the process.

 

K

[mossgrove]

I am very impressed with how you are dealing with all this. You have had to learn an awful lot in a short space of time and you should be heartily congratulated.

 

 

Simon

[DAS999]

<'> Thanks for all the replies. I never thought of music. what a good idea. I will try that. I will burn all the songs she will listen to (which is all of about 6) on to a CD. I believe she does struggle with noise and too many different noises at the same time. Thanks again <'>

[Malika]

Hi DAS

 

You did the right thing going to the chemist was the best idea, and may be little by little you could try to work with her theory of mind in the long run it would help.

You diserve much praise and I hope things will improve with time.

As for people in the shop well it is always upseting and one of the professional I know suggested that I should carry a card with a short sentence explaining the pb to be able to disolve difficult situation but I couldn't do it people acting like that do not diserve to know about my son disability and most probably would not understand anyway.

 

All the best.

 

Malika.

[Noetic]

First off, you should be proud of yourself for caring for your girlfriend for so long without a diagnosis.

 

But seriously, someone as severely affected as your girlfriend (from what you said her level of ability seems rather below what would normally be a cut-off point for AS in adults) NEEDS to be cared for by people who have the proper experience to deal with more severely impaired autistic adults.

 

There is only so much one person (you) with no experience of autism (I know you are asking questions, but the things you ask are often VERY basic bits of information that anyone who has read up a tiny amount should know) can do, and at least for the time being (until you have things figured out) she needs professional care and support, if necessary in a group home.

 

Your gf's GP should be ashamed for not recognising such an obvious and severe (for a person able to talk and go undiagnosed for so long) case of autism, and for not giving you even minimal support after diagnosis. *Everything* you have written about her on here sounds like straight out of a textbook about autism (not AS but IMHO more severe, lower-functioning autism), and it is apalling that she has gone without a diagnosis for so long and that you have not been assigned specialist support ASAP.

 

There are many parents of 'less affected' children who cannot cope alone, and they have lived with autism since their child was born - there is no way they should have just left you to struggle on your own, with no clue about autism and no support whatsoever

Edited November 11, 2005 by Noetic

[Malika]

Hi DAS

 

I agree with Noetic you should try to get some help and professional support.

 

Do you think your girl friend would cooperate? She seems to be in real difficulties and in need of regular help tailored for her needs, and getting some help would prevent you to get over tired and unable to cope.

It is so bad that she never been DX before , Hope you will both receive regular support for her sake.

 

Malika.

[DAS999]

I think she would co-operate. I even think she wants help! her parents were too ashamed of her issues when she was young to get help they just paid a speah and language professional and a behaviour specialist to teach her "normal" behaviour they are ashamed of their actions now. plus she was put in to care at 11 after her mother was very ill following an operation so her behaviours were put down to "naughty care kid disease". We have ab appointment with our GP tomorrow as it has been 8 weeks since diagnosis and we haven't recieved any help or advise so I will push the GP for answers and help.

[Malika]

Hi

 

Please push for help and if nothing comes take an appointment with the practice manager if you have one.

 

Best of luck.

 

Malika.