Does this sound like Asperger's Please?

[Louisa]

In your opinion, after looking at the following, would you say my 14 year old daughter has very mild aspergers syndrome? She is currently waiting for a diagnosis. CAMHS have said they think she does but still want to do some further assessments.

 

 

Social difficulties (social situations cause her very high anxiety) with school, crowds etc. Currently won?t even go in any shop where there are other teenagers.

School phobia (out of school at present)

Sleeping problems (getting to sleep, staying asleep, then getting up!)

Frequent nightmares

Lack of common sense

Clumsy

Very low self esteem/lack of confidence/ painfully shy

Limited interests

Lack of eye contact (not always)

Poor sense of time for her age

Heightened sensitivities/ sensory issues - very fussy taste (foods can?t touch each other, only certain brands, nothing soggy etc, very limited diet), sensitive smell, fear of loud noises, wont wear certain textures)

Have to prompt & ask her to do things over & over & over before they get done.

Average to above average intelligence

Great difficulty organising herself

Seems to be in her own world at times.

Scared to take any medication (melatonin occasionally)

Paranoid about how she looks & things she is ugly when she is clearly very pretty)

Struggles to record homework from school

When she was younger she was scared of everything, eye tests, injections, clowns, sand, grass, loud noises & loud music, fair rides etc.

Worries constantly about forthcoming events.

Constantly argues with her brother who is seven years younger than her.

Has excellent rote memory.

Musical ability

Sometimes speaks quite formally.

Flaps her hair up in the air with her hand (but only at home).

Hates PE

Suffers from separation anxiety at times.

 

However she also has:

 

Great sense of humour, usually gets jokes as well as making them.

Intelligent (academically) doesn?t have & has never had any learning difficulties

Caring & has empathy.

Very loyal.

Interacts with others (when familiar with them)

Reached all milestones early/on time (spoke early etc, no delayed motor development)

Quiet & good tempered (most of the time!)

Affectionate but only when appropriate

Doesn?t really take thinks literally

Doesn?t have any special obsessive interests.

Doesn?t have any unusual facial expressions etc.

Not outspoken at all.

Only routines she is rigid with are bedtime, when she has to do certain things in her room before she will even contemplate going to bed, no matter what time it is.

 

Any opinions would be helpful. Her diagnosis has taken ten months and she won?t get it for a further four.

 

I keep changing my mind as to whether I think she has it or not. As she is currently out of school, this is causing some friction with certain family members who think she is just ?being naughty?. We know that she isn?t of course but would like to know what her likely diagnosis may be

 

Many thanks.

[bid]

Hi Louisa, and welcome to the forum

 

I have AS, and got my dx last month at the grand old age of 41!

 

I think many girls present very differently from boys, many being less likely to be disruptive, etc, and being 'no trouble' at school.

 

I was like this, and I think I have internalised my AS for most of my life so that it has been hidden as I have 'pretended to be normal'.

 

I have just got my written report back from Cambridge, and was a bit shocked to discover I scored really, really highly in all the diagnostic areas. I thought they would say I just crept into a dx!

 

It is worth talking to your DD as much as you can, as there were loads of things that I never told anyone about because I thought everybody did/experienced things the same as me! For example, I had quite a degree of synaesthesia with numbers and letters, but just thought everyone did

 

Don't know whether any of this has been helpful Please feel free to ask any questions...

 

Bid

[Mumble]

Hi,

 

I like Bid am also AS (and female).

 

I don't have long to reply now, however you might find the following thread worth reading through - it may seem a small point, but please, please don't refer to it as 'mild' aspergers - there is nothing mild about AS - you're either AS or you're not.

 

'Mild' AS Thread

[baddad]

Hi Louisa, and welcome to the forum

 

Firstly, I agree with Bid that very often, especially for those more academically able, girls with AS present differently than boys... My pet theory is that it's part neurological differences (girls brains are more 'communication specialised', so I think even when autism is a factor they have a better capacity to 'mask' difficulties than boys) and part social/nurture. I think both those factors contribute hugely to the disparity between male/female dianosis statistics, and that dx generally needs to be far more of an holistic process than is currently the case...

 

Many of the things you've posted later on (Good sense of humour, empathy, eye contact etc) are good cases in point: Early stereotypes of autism/AS simply do not 'fit' for many on the spectrum, and older medical models of assessment overlook all sorts of genuine problems by chasing these phantoms - to the detriment of the people struggling with those very real problems. If you think about it, a 'GSOH' has long been recognised as a 'coping mechanism' and a 'defence mechanism', so in a sense it seems logical that people with AS who can get their heads around the principles of humour will adopt it as a communication strategy to help overcome problems in other areas of communication.... As for 'empathy', it's again recognised that people with AS can have all sorts of heightened sensitivities - why should this preclude emotional sensitivity? Generally, most people I know with AS can be incredibly sensitive/considerate - the problem usually lies (IMO) in their ability to recognise, read, and respond to isolated situations appropriately, which is a very different thing!

 

Of course, none of that implies any sort of opinion on your daughter's situation, but it does sound as though the professionals involved are looking at all the angles, so hopefully you'll have some answers soon. <'>

 

Finally, with regard to Mumbles post, i'd agree that AS is or isn't... it's sort of like being a 'little bit' black, or a 'little bit' gay, but I think it's a really complex issue too, and that there does need to be a differentiation between those who's life options are profoundly affected and those who have better skills to negotiate those difficulties. I find the term 'mild' inaccurate, but not necessarily offensive (in leiu of anything more appropriate). Equally, for my own part I find the semantics of 'I am autistic' vs 'I have autism' equally disturbing... I don't think autism defines an autistic individual any more than being in a wheelchair defines a physically handicapped person: There's a WHOLE person in either scenario...

Coming back to the examples I've given above: a wealthy, black business man living in an enlightened, multicultural society isn't any less black than a plantation slave living in the American deep south at the turn of the century. A gay film star living in Hollywood would have a completely different life to a gay man (or woman) living in a repressive society that regarded his or her sexuality as criminal or sacraligiously offensive. In either case to imply a 'shared experience' based purely on their skin colour or sexuality overlooks so many other factors it does more harm than good...

 

Hope that's helpful, and that you and your daughter find some answers soon.

 

L&P

 

BD

[paulathomson]

i am 32 and am convinced that i too am a/s.. sound very much like your daughter..curretnly i am having severe anxiety attacks again and agrophobia as a result. have been told my son has a/s waiting for the official dx. i always knew i was different... didnt have a clue why as i was very academically bright at school..now that im having difficulties within my life i would like to get checked..

 

the lady that is 41 and just diagnosed.. how did you get assessed?

[bid]

the lady that is 41 and just diagnosed.. how did you get assessed?

 

Hi Paula

 

A couple of years ago my DS' paediatrician suggested I might go for an assessment. She recommended Elliot House, the NAS adult diagnostic centre. That would have cost my GP too much as it is out of area, so I was seen by my local mental health team...a complete nightmare. My very supportive GP then referred me to Cambridge Lifespan Asperger Syndrome Assessment Service, a clinic for adult dx run by Prof Simon Baron-Cohen. I was very lucky as when I was referred they were taking out of area referrals for no fee, but due to the high demand I think they are only taking them from the Cambridgeshire area now.

 

If you contact the NAS they have good information on how to get an assessment.

 

Good luck.

 

Bid

[paulathomson]

thank you bid for the reply. its funny you should say about the mental helath team as i have suffered with severe anxiety since 19 and have never been given much help by doctors only pills which i wont take.

at the moment my anxiety attacks are getting bad and i am struggling to get out of the house to do school run and go to work. have made appointment to see doctor next fri and am going to ask for a referral to mental health team. am i in the right direction?

 

dont know how i will cope though if doctor says no and parms me off with pills...when i am 'ill' i am unable to take pills as specific phobia.

 

when CAHMS said my son has A/S i sadi no way .. not in a million years.. but since finding this forum and reading all the posts i have since thought that it explains who i am and its a bit of a mad thing to say but i feel comfortable knowing what makes me different. i finally feel like i belong somewhere instead of being an oddball. i think if i was assessed and dx i would feel relief.

 

thank you so much paula.x

[Louisa]

Hi everyone

 

I have just read through my above post, which I did quite late last night. I feel as though I have sounded a bit derogatory in the way I have mentioned my DD's good points sounding like she hasn't got Aspergers.

 

I apologise to anybody who has taken offence at this. It was not meant in that way whatsoever. I was just going from different websites and trying to mention symptoms she does/doesn't have.

 

With regards to saying the aspergers may be mild; this came from the phychiatirst at CAMHS who actually said she is 99% sure that she has aspergers but very very mildly. However, after promising us a diagnosis, she has now referred her onto 'Social & Communications Pathway' for further assessment.

 

I am still desperate for any opinions please.

 

Thanks for your replies so far.

 

xx

[smiley]

Hiya

 

In answer to your question - it does sound like your daughter may be AS - but equally, there could be lots & lots of other reasons/difficulties!

 

I wish I was able to give you a definate answer - I remember the whole diagnosis process as being very difficult with my son. As a parent - I felt in limbo, waiting for some answers and praying some help would follow.

 

Keep reading & posting. <'>.

 

[Tally]

The medical profession too often describe AS as "mild," so it's no wonder you described it that way too. I can see that you didn't mean any offence by using the word "mild." As you learn more about AS and autism, you'll understand why that's not really a good word to describe it.

 

AS certainly could be a possibility based on what you have described, but it would be an atypical case if she has empathy, does not take things literally or have a special interest. Some AS people appear to understand other people's emotions, but work it out logically rather than innately. Perhaps she has a special interest which is not obvious because it is something common for girls her age (like pop music or fashion). None of the other things in the 2nd part of the list would exclude the possibility of AS, and actually, many of them are common features of people with AS.

 

Girls often do not present a typical case anyway though. AS is diagnosed far more commonly in males than females, and I believe that is because the diagnostic criteria look more at how it normally presents in males. AS males are stereotypically quite outspoken, but AS females are often very quiet and don't know what to say or are anxious about speaking. By the age of 14, she will have developed coping mechanisms to disguise her differences, which may make AS less obvious, even to the professionals.

 

If your daughter feels like she is different to other people (as many AS people do), that might explain why she has become so concerned about her appearance and coming across other teenagers. (These, by the way, are the type of issues that show that "mild" is the wrong word to use.) Even though you don't yet have a formal diagnosis, it might help if she understood that this might be why she is different.

[Wardie]

Hi Louisa

I remember doing what you have done when I was trying to find answers - I searched all the web sites - and I also remember one of the doctors suggsting 'mild aspergers' - and thinking that there was nothing mild about my DS at all! In actual fact he ticks almost all the boxes for AS.

Hopefully you'll find youll get a lot of support from this site, whether or not you get a dx - I know I do. Just reading everyone's mails makes me realise I'm not alone and I have already gained a great many coping tips from reading the various threads. I'm a very new member too, but welcome and I look forward to hearing from you as you go through the tortuous route of dx and beyond. <'>

 

Ally