Misunderstood or wrong?

[kerryt84]

I went and saw someone yesterday who offers a therapy that might be able to help with my sensory issues. She is not a specialist in autism, but she has worked with lots of autistic children. While there I mentioned that I had been referred for the possibility of getting a diagnosis of Asperger's and that I believe I have it. She looked quite puzzled and said she really didn't think I had it. Her reasons for this were that apparently I didn't 'look like one of them', I'm guessing by that she meant I was able to make eye contact and would smile and look interested while she spoke. She also mentioned that she had met people with Asperger's and they always talk lots about their obsessions and find it hard to talk about other things.

 

So this has led me to completely doubt all I have believed for the past few years. To me the criteria for AS describe me so well and put a meaning to all the problems I have had in my life. Yes, I can make eye contact and have a perfectly normal conversation with someone, but that doesn't mean it comes naturally or is easy for me. Also the more I read about the differences between girls and boys with AS, the more it makes sense. When I had my initial appointment with a psychologist and an occupational therapist they noted in the report that although I reported difficulties with communication I made perfect eye contact and had a raport with them. I did ask them to put a note with my report stating that although I make eye contact I find it uncomfortable and that I do find it easy to communicate in that sort of situation (very structured, I know what I'm going to talk about etc.) They have referred me on to someone who specialises in AS.

 

So are all these people right and I couldn't possibly have AS? I'm feeling like a bit of a fraud at the moment because of these 'professionals'. Every day of my life is such a huge struggle though and these people don't see that, my relationship is even in jeopardy because of my lack of communication skills. How can I make a person who is able to diagnose AS see beyond my good communication in a structured appointment? I have written pages and pages of all my issues but they always go by what they see. If they came and lived with me for a day they would see a completely different person.

[justine1]

Hi

Well I think in the case of this lady who offers therapy it maybe she doesnt know enough about Autism.I dont know what kind of therapy she offers but even though she has encoutered children with ASD doesnt mean she can give you a "yes" or "no" to you having ASD.For one thing it presents so differently in everyone and secondly as an adult(some may agree here) your "symptoms" may be less obvious as you have adapted.

 

However,I wouldnt rule out the fact you dont have autism.It maybe that the professionals you have seen got it wrong but it is rare and more so if two professionals both think "no."

I think eye contact is a huge part of a diagnosis,my son can make eye contact with me but it makes him obviously uncomfortable and his eyes wonder esp. to the ceiling.He doesnt make eye contact well or not at all with strangers.It is clear its not the only sign but it is important.Also how you are when you having a conversation with people.

 

I dont know what you expect as far as them observing you.I think it would be hard to get a diagnosis for any condition just based on what someone said how they are at home etc. All professionals need to make observations on how you appear.

 

All I can say is dont stress about it and if you have already been referred you can wait for that and see from there.What do your parents/family say?can they help write about how you were as a child etc.

[Suze]

hi kerry you said yourself she isn,t a specialist in autism, I would,nt be swayed by what she has said to you, go on what other proffessionals you have seen have said, the ones that have more experience in the field of dx adults with AS/ASD. BEST WISHES SUZEX <'>

[kerryt84]

I know everyone presents differently and I suppose that is what is so difficult at diagnosing AS. Of course I am only thinking I have it anyway, I will take the professional's decision as the final decision. If they say I don't have it I will be very disappointed because then I will be back to square one again. It's not that I want AS, I wish I didn't have any of the issues I have, it's just that I would then know why I am like I am. I have read books by women with AS and their childhood and adult lives sound very similar to mine. I know I can't go by that, but because of all these different reasons that I think I have AS.

 

Is it a certainty that all people with AS can't make eye contact noticeably so? I know I find it uncomfortable, but most of the time people don't notice. My boyfriend notices, because he knows the times when I won't make eye contact. There are only certain situations that I find it almost impossible to make eye contact. I did have a therapist who commented on my difficulty at making eye contact at certain times, and he tried to work on it with me.

 

The problems I had as a child are a bit different to the ones I have now. But, I would say I do not find life any easier.

[ridvan]

Hi Kerry

 

I concur with all the replies to your posting. If that therapist puts avoidance of eye contact as the major contributory factor towards a diagnosis of Autism, my son wouldn't have that diagnosis, which he does. My son's eye contact is great with people he knows well, although less so with unfamiliar people, almost fleeting glances if you like. I believe that my son has learnt to make eye contact as he understands that's what people expect him to do to show he's paying attention, rather than it coming naturally or comfortable to him. As for me, as someone who is also awaiting a diagnosis of AS, I make good eye contact, but you know, it just don't feel comfortable nor does it come naturally! It's as if you have to make a special effort to show people you are engaging in conversation, rather it takes a deliberate effort which perhaps neuro-typicals don't need to.

 

What gets me is, that you almost doubt yourself when someone not qualified, yet some kind of therapist, confidentally suggests that you couldn't probably have AS, as they say that you come across as 'normal' when you certainly don't feel it! Please, don't feel you're a fraud, and get an assessment! Best wishes.

 

 

[Tally]

When I first learned about Asperger's and that eye contact was a common difficulty, I started to really make an effort to make eye contact in order to make other people feel more comfortable talking to me, and it was then that I realised how very difficult I find it to make more than fleeting eye contact once in a while. A number of people have commented that I make very good eye contact, and I was always very surprised by this. I even felt angry because my good eye contact was used as a reason why I could not have Asperger's after all, and I felt that people were lying about me. I have now realised that I do look at people's mouths when they are talking, as I cannot hear what is being said without watching their lips move (although I do not lip-read). I think this is what people are seeing, and when they think I am looking at their eyes I am actually looking at their lips. Now I realise that, despite my difficulties with eye contact, it's not really something I need to work on because no one notices anyway.

 

Many of the women with Asperger's I have met are very much like me and come across as painfully shy, whereas many men are quite outgoing, and their inappropriate social behaviour is more apparent. This is obviously a broad, sweeping generalisation and not all people conform to this, but MANY do seem to.

[justine1]

When I first learned about Asperger's and that eye contact was a common difficulty, I started to really make an effort to make eye contact in order to make other people feel more comfortable talking to me, and it was then that I realised how very difficult I find it to make more than fleeting eye contact once in a while. A number of people have commented that I make very good eye contact, and I was always very surprised by this. I even felt angry because my good eye contact was used as a reason why I could not have Asperger's after all, and I felt that people were lying about me. I have now realised that I do look at people's mouths when they are talking, as I cannot hear what is being said without watching their lips move (although I do not lip-read). I think this is what people are seeing, and when they think I am looking at their eyes I am actually looking at their lips. Now I realise that, despite my difficulties with eye contact, it's not really something I need to work on because no one notices anyway.

 

Many of the women with Asperger's I have met are very much like me and come across as painfully shy, whereas many men are quite outgoing, and their inappropriate social behaviour is more apparent. This is obviously a broad, sweeping generalisation and not all people conform to this, but MANY do seem to.

Good point Tally Though Dan hasnt got his diagnosis yet he always looks at peoples mouths so again no eye contact,but at least he looks in the direction more than what Sam does.I guess as you say it could be misleading.In fact I often thought when Dan was a baby that the way he didnt respond and watched the movement of my lips,coupled with his speech problems, was because he was deaf,he is four and has been for four hearing tests because of this worry and he has 100% clear hearing.

[justine1]

Hi

Sorry I wanted to add something but had to go offline quickly!Why I was asking about how you were as a child is because I think this is very important in the diagnosis process.Yes,you are likely not to behave in the same way as you once did,even Sam has come along way in a year,his autism can in a sense appear different as he grows(though it is also down to personality and age changes)However you may have fitted some of the descriptions of children with autism.

 

So this may help,if you can get as many descriptions/examples of behaviours that were unusal for others the same age.When I went for Sams dx I had to recall every moment from even before he was born,then every month until now(he is nearly 7)this may not be possible but any of your earliest experiences will help and as I say if you got someone to back this up it would be very good.

[cmuir]

Hi

 

Unfortunately lots of people offer opinions irrespective of whether invited or indeed qualified to do so. I can understand why you're having doubts, but feel strongly that the fact you felt you may have AS in the first place, that it should really be investigated further by an autism specialist not someone who perhaps thinks they're knowledgeable. The fact is that not everyone ticks every box in terms of meeting every point/diagnostic criteria. My son, for example, isn't what you'd call classic or ticks every box, but as time has went on, I've no doubt that the diagnosis was the right one.

 

Caroline.

[Sally44]

I just wanted to add to the comments about 'making eye contact'.

I think there are lots of reasons why a person on the spectrum can or cannot do this. For example with my own son.

He cannot speak and look at someone at the same time because that is too much processing. He has to concentrate on what he wants to say and cannot look. (and this does not just affect eye contact, I think that is just something that the NT population picks up on - he also cannot listen whilst he is trying to construct a sentence. We can 'multi-task' in this way and look, listen, think about something else. My son cannot. He usually has to do one thing via one sense at a time).

If he is looking at someone he can definately make eye contact. He can examine you in detail and notice very small things such as an eyelash on your cheek and would want to remove it.

If my son is encouraged to 'look' he will not hear what you say. Infact, if you want him to 'hear' he does that better if he is screened off from the person/people talking. In that environment he 'hears' everything. But if you then put him in the group that is talking he will not hear anything.

This ability fluctuates day to day, depending on many factors.

 

I know that some on the spectrum have said that eye contact makes them feel uncomfortable. My son has never said this, so I don't think this is a factor. I think it is more about information and sensory processing.

[baddad]

Hi Kerry - I would agree with the other posts that one person offering a 'therapy' who doesn't have a huge amount of experience of autism is unlikely to give you a balanced opinion. Any opinion offered is more likely to be based on stereotypes than 'holistic' assessment.

That said, though, I think you also need to be thinking about the 'why's' of diagnosis. For many people, I think, the idea of a diagnosis is intrinsically linked with the idea of 'explanation' - and while a dx of ASD may well seem to explain all sorts of social unease/difficulties a person might encounter it can also be a 'blind' that screens them from other issues. For people that happens to, a diagnosis, i think, can actually be a huge negative rather than the positive it should be. More improtant, Imo, is to undertake that 'holistic' assessment for yourself and to accept the person that is rather than the person a particular label might imply, because whether the label is accurate or not it will always at best only be part of the equation.

Coming back to the original point, though, I am always hugely sceptical about people who make snap judgements about dx's, either positive or negative, and the more 'expertise' they claim the more disturbing i find it if they talk in generalisations rather than specifics.

 

Hope that's helpful

 

L&P

 

BD

[zenemu]

ASD, and Apergers especially present in so many different ways it is very hard to point at specific traits and say yes or no. Let me give an example. I have AS and I do struggle to make eye contact, but I don't talk constantly about my obsessions, because I learned at a young age that nobody else is interested in them, so I keep them to myself. A female friend of mine has AS and she makes eye contact without a problem, but she feels the need to express an opinion about everything (often uninformed sadly), in order to fit in and she smiles a lot when she isn't following conversation or she suspects she has missed a joke or an ironic statement, so basically she comes across quite accidentally as really ****** rude, without meaning to, and she doesn't notice. The fact that I can observe her behaviour and see that it isn't correct suggests that her AS is vastly different to my own.

 

Having said that about my friend, it isn't uncommon for women with AS to have much more subtle symptoms; one commonly accepted reason for this is that women are expected to be more social than men and are approached much more and talked to much more openly from a young age.

 

At the end of the day you know yourself better than anyone else, if you feel you are AS, then there is a pretty good chance you are. If it will put your mind at rest seek an assesement and find out for sure.

 

Zen

Edited June 4, 2010 by zenemu

[puffin]

I'm assuming that OP is female

 

If the therapist is not an autism specialist she might be focussed on the Asperger stereotype that mostly dscibes males - females have a very different presentation as they on the surface have greater social skills and can make eye contact - but this is often something that girls (and some boys) teach themselves to do to fit in or by copying others like you would learn a foreign language - often these are not things that come naturally

[kerryt84]

Thanks for your comments everyone. Yes I am female. I haven't told my parents I think I have AS yet so it's hard to find out what traits I had when I was younger. I have asked my mum some questions, but she gets suspicious as to why I'm asking. I am going to tell her soon though as I need her support and she will need to give an account of my childhood for a diagnosis.

 

I have had an initial appointment with a psychologist and an occupational therapist and they have referred me on further but apparently there is a long waiting list.

 

I think what baddad said made a lot of sense. I do feel like I'm resting all my hopes on a diagnosis, because it will be an answer to all the questions I have. I think a diagnosis wouldn't have a negative impact on me, but I think I will have a hard fall back to reality when it sinks in that even with a diagnosis there isn't much support out there.