Help please - am not sure if daughter has AS

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Hello everyone - I am so glad I found this group! I am from the south of the UK and have been married for 20 years to a wonderful sweet man who has AS traits (undiagnosed) but very subtle, he can hold down a job fine but we have had many difficulties in our relationship and always working out ways to understand one another.

We have a son age 13 who was diagnosed with moderate/severe autism at age 3 and a daughter of nearly 16 whom we strongly have suspected for some years that she falls on the spectrum, albeit at the very high functioning end. I myself was diagnosed with Bipolar type II disorder in 2006.

I am very concerned about my daughter at the moment and whether or not she really does have Aspergers so I wanted to list a few things that she does/has and if anyone can give me an idea if its enough for a diagnostician to want to do an assessment.

1. She has many sensory difficulties with touch, she will initiate affection but does not put her arms out to hold us and her arms are by her sides. When we try and give a hug she squirms and is uncomfortable.

2. She hates the feel of flour, seeing and being sick and certain textures of fabrics.

3. She self harmed from age 13 to 14 and a half and we dont know for certain if she has stopped but she assures us she has worked through it with the help of the school counsellor.

4. She has a very monotone voice and has always been very verbal. When she was a toddler she had the most bizarre language and babbling and I remember then feeling worried about her.

5. She is unable to get jokes at all or sayings, for instance I said the other day to her something like "oh I pulled my hair out over that" and she was mortified and said "oh my god did you really that must have hurt so much". There has been many times this has happened with sayings, she just cannot understand them and is very literal.

6. In conversation she can go off a subject with a flick of a switch and change to what she wants to talk about - its almost like you feel she hasnt heard you at all.

7. She talks in the greatest of detail this floors me at times!

8. She is very very angry towards me. She knows that I have Bipolar and is blaming my illness on everything I say or do which is very cruel and hurtful, when all I am trying to do is be a good mum and help her with difficult situations at school etc.

9. My dh and dd have a very close relationship, always talking logically, at first I was resentful about this but then I realise that he understands her better than I do at times and he helps her alot to understand herself but she refuses any mention of Aspergers and that she may have it.

10. In the summer she also got diagnosed with Polycystic Ovarian Sydrome (PCOS). She had a routine blood test to check her hormone levels and it came back positive for that. This was a total bombshell to me because I too have PCOS - you can have infertility problems, extreme lethargy, body aches, irregular periods, excess facial hair and more!! This condition also makes you feel so very unfeminine too. So add AS, PCOS and the teenage years to the mix its a whole new ballgame!!

11. She is extremely disorganised and says she can keep everything in her head with school stuff and she refuses any help from us with preparations for her forthcoming exams. She doesnt ask questions in class.

12. Both dd and ds have Obsessive Compulsive Disorder - my dd has a cleaning the house obsession (yes I know I am lucky)! and ds has to touch everthing around him. Dd thankfully does not have OCD.

13. Her body posture is extremely poor and her shoulders slope right down.

14. She has been told she has 'savant' skills in art and she has been drawing portraits since very young.

15. She lacks empathy at times and finds it very hard to see the 'bigger' picture.

16. Her diet is extremely poor and mainly consists of junk food/bland food. Both my children restrict their diets badly.

Ok, sorry this has turned out to be so long a read! Good to get it written down here though and I wonder if anything says to you "yes she needs to get her daughter diagnosed"? I have already spoken to my son's Psychiatrist who has over 20 years experience with autism and she said she will assess my dd without her knowing she is being assessed and whilst her brother is in the room too, so the focus is not on her. I guess they have their ways with defiant teenagers!

Thanks for listening.

Does she have AS? Quite possibly.
Is it enough to warrant an assessment? I'd say yes. The sensory intolerances, the monotone, the detailed speech, the inability to understand figurative expressions, the "finds it very hard to see the bigger picture," these are all characteristic of/ common in AS.

It sounds like she is worth assessing, but I have a question:

What do you want to DO with an assessment? Given that your daughter seems uncomfortable with the idea of being AS, it seems important that you identify what you want out of the process, and what advantages the knowledge might give you, before pursuing it further.

Once you've identified those goals, I would talk to her about it. I wouldn't do a secret assessment on her; either she buys into the process, or she doesn't. She is at an age where a sense of self-determination is important; I've read too many posts from too many teens angered either by their parent's insistence on a label the teen doesn't want, or the parent's complete lack of interest in pursuing one the teen believes applies. If there are clear advantages to having an assessment, you may be able to sell her on it.

Good luck.

I too am from the south of England and have a 16 year old daughter who sounds just like yours whom I suspect has Aspergers. I pushed and pushed to have her assessed but got nowhere, although I didn't suspect autism at the time, I just knew something wasn't right. I was constantly told it was my imagination or my lack of parenting skills. They wouldn't assess her for anything.

A year ago we moved abroad. As soon as I mentioned my concerns here she was properly assessed and they confirmed autism, but are still testing to see where abouts on the spectrum she falls.

Therefore my advice to you is to be very clear with the authorities about what you suspect. Don't rely on them spotting Aspergers. Tell them straight, that you want her assessed for it and don't let them get away with doing the bare minimum as they did with mine. If you can't get any help there then contact the Autistic Society who can put you in touch with doctors who will do the assessment for you.

Another thing I found really helpful was the book Parenting Your Aspergers Child by Alan T Sohn. This book has a huge, checklist, style list of characteristics which helped me enormously. There is so much that she does that are part of being autistic that I had never mentioned to the doctor in the past as it never occured to me that they were signs of the same problem. I just thought that they were harmless little quirks.

By the way, a friend sent me this book long before she was diagnosed. Her reasoning was that if she is showing those behaviours then a book dealing with those behaviours would be helpful regardless of whether or not she was diagnosed.

Thanks for your reply hazelm - a part of me doesn't want it to be true and another part of me does.

Hi DW - thanks for your reply. There is no way I want to hurt my daughter by going behind her back but at the same time she is so deep in denial it will only take an expert to bring her out of that and that could take some time.

Have you heard of the 3DI test (not sure if this is the correct name) for autism?? I went to my see my son's psychiatrist today for his review and handed her the list of what I typed here about my daughter. Upon looking at it briefly she said "oh yes certain things do jump out at me already" and I asked if she would have to have the DISCO assessment and she said well she would have the 3DI test? I can't remember now exactly what she said as my son was pretty noisy today!

The psych said I can ring her anytime so that is really reassuring and that she will get back to me in 2 weeks as she is on leave.

I personally want to have closure with all of this. We have seen traits in her since a baby and I feel she would eventually feel better about herself if she knew what she had. She doesn't have learning difficulties like my son, academically she is doing ok - although the exams are pressing and she is not taking it on board at all. On the other hand it may be better for us to know and for herself to find out that she has AS when she is ready to accept it.

Thanks ever so much for your advice motherknowsbest. I will take a look at that book. How old was your daughter when she got a diagnosis? Was she accepting of the diagnosis and complying with going for an assessment as I think this will be the biggest hurdle to get over with my daughter.

Women and girls with AS are diffrent then men and boys with AS there is a check list on the womens forum right now. Take a loot it might help abit.

The proper assessment process started last November when she was 15. I got the diagnosis in August this year.

When I first told her my suspicions last year she was a bit shocked. She read the checklist for characteristics I printed off that book and promptly burst into tears. Tears of relief I think. She asked me if this meant that she didn't have to pretend anymore. I was shocked by this. I was not aware that she was consiously making an effort to appear normal. Then she was very quiet for a few days as she digested it. For those days, she carried the checklist around with her like some sort of comforter.

She fully engaged with the assessment process and has said that she actually enjoyed it. But then she is a talker, so the chance to have one to one sessions with a captive audience appeals to her. Also I think it made her feel special. She went from always being on the fringe of stuff to suddenly being the absolute centre of attention.

Hi MotherKnowsBest, I am so pleased to hear that your daughter took it all very well and took it on board what you had prepared for her.

I had no idea it would take that long to get a proper assessment going- are you in the UK? If you are I am guessing this is on the NHS.

We are now waiting to hear from my son's psychiatrist about how to approach the next step for our daughter - she said about a referral through the GP to CAMHS and an assessment with ourselves and just the psychiatrist (can't remember the name of assessment) initially and see where we go from there. Our daughter has always been in total denial and very angry if I have ever raised the possibility she could have AS, I have said to her that it is highly genetic but she is in a total mindset about it all sadly - in some ways I think she will find out in her own time when she is ready!

Can you tell me how they conducted the assessment process with your daughter? Thank you

The NHS did nothing for us, other than convincing me that it was my fault and sending me on repeated parenting courses. Absolutely pointless. They seemed unable to grasp the fact that star charts and rewards have no effect on her at all, regardless of how many times you tell me I'm not doing it properly.

We are in Sweden now and all her assessment was done here.

The first step was a meeting with 2 normal child psychologists and me and my daughter. I had to explain my concerns and they asked her if she thought what I was saying was true.

The next meeting, a few weeks later, was with a doctor who specialised in autism in girls, flown in specially. He talked to both of us again. His role here was to decide if there was reason to suspect autism and to decide whether or not to pursue a full investigation. He said yes, and has since told me that he knew she was autistic from this first meeting but that he still needed to go through the proper procedure to confirm it.

She then had a full medical by the school doctor to rule out any obvious physical causes.

Question and answer sheets (felt like hundreds) were sent to me, all her teachers, school nurse and school counsellor. These were the 'does she do x, always, sometime, never' type questions.

Then we had many meeting at the hospital going through similar type questions. Some were just me, some were just her. She had to do things like look at pictures of faces and choose the word from the list that best described what the person was feeling. Or look at a picture of a scene and tell a story about what she saw. She got a bit stressed about that one because she couldn't do it, until I explained that that was probably the whole point, to see if she could do it or not. They also looked into the whole family history, looking for any patterns in behaviour which would indicate a history of autism, even if undiagnosed.

She also had assessments for other possible causes, such as ADHD and bipolar. All of which were ruled out.

Then they confirmed that she was indeed autistic in August (this country shuts down for June and July so nothing happened then). She has had approx 6 other assessments since as they were having trouble pinpointing exactly where on the spectrum she fell. Intelligence and 16 years of pretending makes diagnosis very hard. We get the final diagnosis tomorrow.

You may find it useful to contact the National Autistic Society UK, the website is below. They can send you a free information pack.

http://www.nas.org.uk/

All the best with it all and if I can be of any assistance please don't hesistate to ask.