Adult daughter refuses diagnosis

I kind of know how you feel,  My daughter has Aspergers and is 18.  I am 61 and her mother and I have not been together for 18 years but I have been part of my daughters life growing up and paid for her support.  She is very bright 4.0 in all classes and accepted to all major colleges.  Her behavior is off the charts, she will have many melt downs during the day, if you ask her nicely to do something she will do the same as your daughter, she has no friends because of her social skills.  My main problem is a few months ago a psychiatrist told us she has Aspergers but her mother refuses to believe that.  My daughter lives with her mother and her mother had refused to bring my daughter to a psychiatrist until now.  The school system had asked the mother to please bring my daughter to a doctor to get analyzed but the mother refused and blamed her behavior on me because we were not together.  It has been a hard battle because I want my daughter to get the help she needs and therapy,  I wanted to have a family meeting with the doctor and the mother and my daughter refused to have a meeting.  I am 61 now and I worry what will happen with my daughter when I am gone?  Just thinking about it hurts me and I am very worried.  It has not been an easy 18 years.  As a parent the melt downs in public are difficult but I do my best to have my daughter calm down.  I want my daughter to get help before she hurts herself or others.

I think it may be better to back off on the diagnosis front too. She may fear the stigma of it and what it may mean for her. She may be picking up on your fears about her capabilities and strengths. She may feel that you have no faith in her.

I also think 21 can be a tough milestone year. She probably both desires and fears testing her untried adulthood given that she has already had extra help for learning difficulties. 

Probably it is not something to tackle alone and there is help  and support around for the parents too.

What is she good at? What could help her develop her confidence and knowledge that she could ultimately be capable of negotiating the world?

Hi your situation is very similar to mine. My daughter is now 23 and has similar traits whereby if anyone questions her about something that she has already said she starts shouting that nobody ever listens to her and stomps up to her room, slamming the door and talking to herself saying things like, nobody cares and why do I bother coming home. She has been manipulated by a number of people already in her life and is currently being controlled by someone at work.

I'm interested to learn how you have progressed over the past 3 years.

Thanks very much for the replies from you all, very interesting.

Just to clarify that when our daughter got her SEN Statement in primary school it did say on it that she probably has Aspergers, but for one reason or another a formal diagnosis was never given. Perhaps in hindsight we should have persued this more at that time, but we are where we are now and according to some posters on here it is fairly common for a late diagnosis. We have only included a small sample of her behavioural traits but we could continue with many others all of which conform to the AS traits.

We will continue to read this forum as it seems that there is a wealth of information to be learned from reading about others experiences which should help us to understand the condition better and therefore help our daughter as she progresses into adulthood.

We will provide updates.

Thank you all again

Thanks Longman, I knew you'd have the words...

Thanks Classic Codger for the warning......gee that bad....

I understand your concerns at 60 about your daughter getting the right support in case you are not able to be as supportive.

Autistic spectrum can change over time, but it would usually have shown other characteristics in the past. You may have overlooked these previously and only noticed them now, but it isn't something you catch - it is there from early on. It is due to actual difficulties making it harder to compete in an NT world.

This is important because for a diagnosis they will ask for evidence of development milestones in early childhood, issues in school etc. If she was fine at school, and didn't have any obvious difficulties at infancy, the assessors may consider other factors.

Particularly autistic spectrum tends to show up at transitions - starting primary school, beginning of teens and peer pressure in teenage years, going from school to college/university, because it involves change, and people on the spectrum don't have good social referencing, so have more trouble with such changes. That said it can differ between individuals, and if she went through with a close group of friends supporting her, she may have managed transitions OK.

Autistic spectrum in girls/women is less readily picked up, because people make inappropriate assumptions about girl's growing up, and girls seem more successful at hiding things, but you ought to have seen some indications, even if put down to other reasons. An assessor is likely to ask about this.

Just confrontational without other indicators could have other causes. As classic codger has introduced things like sensory overload and bottlenecks in coping with external factors tend to produce pressure points. But this would have happened in the past, even though current circumstances make it more obvious.

You give some valid AS traits, but some of these can be characteristic of any young adult trying to assert their own individual perceptions. Interactive conversation in autistic spectrum contexts arises due to not being able to read social cues (or generate the right non-verbal information for others to read). Someone on the spectrum would have real difficulties keeping up with conversations, getting tired quickly, and having to guess where conversations are going. Not being able to hold a meaningful interactive conversation could be down to a difficulty relating to the people engaging with her in conversation, or an indifference to the subject matter. Is she comfortable chatting to her peers, but not with older people? Someone on the spectrum wouldn't be doing well with own age group but might seem to be OK with older or younger, where the difficulty might be put down to age difference.

Not willing to experiment with new ideas might be due to things like focus and change, but on its own that doesn't sound like sufficient indication. And wanting to go to the same places every time could be a preference for routines, but might just be an indication of narrow preferences.

Autistic spectrum tends to affect people throughout their lives. It isn't the obvious choice to explain someone who changes personality "out of the blue", unless it is reflected in less obvious similar behaviours in the past.

I'm an AS person, how am I coming across? Communication can be very problematic for us, it says here.

If your daughter is ASD, her behaviour as you describe it is normal. She is a normal AS person. Normal AS people are not like normal NT people, we are different. Not ill, not 'damaged', just different. If you can possibly persuade her to come on here and chat, she may find out that she is not alone. She'll be very scared, but there's nothing to be scared of and everything to hope for. We are a community of her kind of people here, we welcome new chums, and we try our best to understand and care for each other.

Or, just tell her we 'get' her. Parents of AS people will 'get' you two, too!

One aspect of our difference is that we are hypersensitive, and this varies but we cannot tell you why. Imagine if you can, all of your senses being made acute. Your ears hear a pin drop, literally, in the other room, light blazes in your eyes when other people are simply comfortable with the light level, you smell funny odours that other people simply cannot detect, someone touching you feels like they have put a hot iron on your skin. The more sensory input we get, the worse it can get.

This is very real to us. When our senses can't take any more accumulated overload, we go into meltdown. At the right time, any tiny thing will set it off, like the last straw breaking the camel's back. Our behaviour during meldown is horrible and destructive, we know that, we can't stop it even though we want to, it simply takes us over. Tired for days afterwards. And ashamed of it, and angry that it 'got us again' and unable to explain it to ourselves, let alone anyone else. Commonly, pre-diagnosis, we can be very lonely and isolated.

Your daughter's behaviour as you describe it is typical. Supermarkets, for instance, are hostile for many reasons - funny lights, too much noise, sudden noises (especially!) too many people, being touched. In these circumstances, we are likely to behave that way and probably won't know that we're doing it. Don't worry about people's comments, people are ignorant, but my answer to the 'what have you done' comment would be 'had a disabled child, why, are you offering to help. We'd be glad of the asistance'. Watch 'em run.. .

I know this is not what you intend, but here is the type of thing that might be happening for her. If you tell her what to do, you are giving orders and she will refuse. If you ask her twice or sound in any way harsh, you are frightenening her. If you use a phrase like 'oh why don't you just do what you're asked' she's hearing you criticise her for existing, and if you touch or hug her, you're physically causing her pain. If she is undiagnosed ASD, she won't even understand any of this herself, and if you suggest it, you're saying she's 'not normal' and she may have been hearing other people call her that for years. Loony, mad, ***, nutter - there's a long (but wholly untrue) list.

Yes, I know it sounds screwy to you, and that's why you struggle to understand, and she struggles to be understood. None of this will make any sense to her, she'll just have some idea along the lines that the world hates her and wants to pick on her all of the time. You can't change who she is, but you can change the way you are with her. You sound like you need reassurance that she will be OK (there's a good chance now) and I think you need lots of help and advice. It's all here, and we all want to help.

I think you need to talk to the Helpline.

Hi, thanks very much for the reply. The reason that we would like our daughter to visit the GP is that all the NHS services that may be able to assist her seem to require a formal diagnosis before thay kick in, e.g. with help for employment  as well as the ASD management side of things.

Several recurring behavioural examples are: firstly if she is in the kitchen helping to cook dinner with my wife then if she is asked to do a task then she thinks she is being shouted at and goes back up to her bedroom and slams the door behind her, shouting Stop shouting at me. Secondly often in a public place like a restaurant or supermarket, if asked a question she can start to shout loudly back at us; this can be very embarassing and on occasions we have been concerned for our own safety as members of the public have intervened asking us what we have done to make her act like that.

She has some typical AS traits such as being unable to hold a meaningful interactive conversation and very repetitive behaviour, not willing to experiment with new ideas, wanting to go to the same places over and over again.

On a more positive note she can be good company for short periods of time, has a very good memory and is quite adept with computer skills. We are getting in our 60's ourselves and will not be around forever to look after her.

Thanks again

Hello, I'm an AS person - welcome!

Let's start by assuming that your daughter has ASD. We generally agree amongst us that the terms Asperger's and 'high function' bear little relevance to our experiences. There are base line behaviours, effects etc that we all have in common, and it appears that, currently, we understand this much better than the Professionals. Either that or we just don't understand at all.

Many people are content to stop at a self-diagnosis and don't seek a professional assessment. We make no distinction, in fact we're happy to help those who simply wish to understand theirselves better. All are welcome here.

ASD is not an illness, it is not a disaster, and she doesn't need your over concern, quite the reverse. I know it's difficult with your own kids, but try to relax and back away a little just now whilst you gather information about the condition. Honestly, it WILL help - all of you. ASD is a difference that we all share. It brings with it rewards and difficulties, but the key is to accept her as she is.

The first thing you should understand is that if you keep banging on at her, you will drive her inside herself and you are doing great harm when you think you are trying to help. Sounds counter-intuitive I know, but often that's how it works. If you spend time on here seeking information you'll get the idea. You might also find it useful to describe her behaviours to us, and we will try to help you understand.

Her perception of ASD may be that you're trying to call her names - she'll be very sensitive to that, far more than an NT. Better to tread not at all than to tread carefully, if she's AS, you'll still be wrong. In fact, anything you do or say will be wrong, especially if she is particularly hypersensitive at the moment.

You'll get a range of views and ideas to choose from, but for the moment my best advice would be for you to back away, try not to intrude on her more than necessary, gather your information, and when you improve your understanding of the condition, and bearing in mind that you know her better than she knows herself, we can try to help you move things along.

Many of us have suffered through late diagnosis, and your daughter may very well be living in a state that we understand extremely well, but she won't. If she can bear to look, we're here for ALL of you.

Do use the Helpline, other parents will help you too on here, and try not to fret. Easy to say I know, but please, for your own sakes, do your best. Your love and concern for your daughter is obvious, and we respect that.

Also, watch out for Longman - he'll be along presently and he's well worth listening to!

All the best