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Catwoman

Daughter newly diagnosed aged 17. What next?

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Hi,

my 17 year old daughter was diagnosed with Asperger's syndrome with dyspraxia in December. She has found it hard to come to terms with but is glad that she knows 'why she is weird'. We are awaiting a further appointment from the psychologist, but this could be some time away yet. I am 100% sure that my husband also has Asperger's syndrome, although he does not care about a diagnosis, as he is able to cope with every day life, and does not worry about how people view him. Jen will need to redo one of her a levels next year as she missed a lot of college in her first year there due to operations. Her biggest fear now is the thought of being without anyone who she knows as they will all leave in 3 months time. Her major struggles are with social interaction, although to passers by, they might view her at times as being giggly and happy, this is usually a cover for feeling akward and unsure. Jen spends most of her time in her room listening to music and rarely goes out. She is very intelligent and kind, has no problems reading facial expressions etc, but is finding life so very hard. As a young child she always wanted to be a doctor, until she got older and realsied that the face to face stuff would be hard. She then thought about pathology and for a while became obsessed with the body farm and decaying cadavers. (That sounds dreadful, perhaps I should have written very interested in bones etc) I took her to an archaelogical dig(and had to stay with her) where she dug up some ancient skeletons, but now she has decided that being a forensic pathologist is now boring as they mainly deal with ancient bones. This leads to her next dilemma which is wanting to choose a degree course which hits her interests, but leads to a job which would not be team led and would require her to not have to socially interact to a level which she would find difficult.

 

Does anyone have any advice on dealing with so many changes at a similar age? My husband has dealt with life by not making friends, and by avoiding social occasions and interactions which make him uncomfortable. However, he is very family focussed and is very loving like our daughter.

 

I also have a 22 year old son, I work with an adult with cerebral palsy, a young girl with autism and am a trained early years teacher. I am starting a new job in a special needs school next week. I was a stay at home mum until my children were in their late teens.

 

Thank you.

 

PS Unless you see behind the scenes, you would never know that my daughter had any difficulties. It has been hard to even convince our own close family members that Jen has Asperger's syndrome. It is so much a hidden disability. However, I would not change her or my husband for the world. I just wish people would try to understand more. So many people just did not 'get it' when i said that Jen was struggling with college, but it was not that she did not want to go, rather that she couldn't go.

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hello and welcome, there are a few books on asd and adolescence. i have some idea how your daughter feels as im also at home most of the time. i only got out to asd or hms/eds type events.

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They're a bit of a nightmare to spell but basically my joints partially dislocate without warning on a regular basis,

Today my knees and shoulders have been a problem tomorrow it could be my hips, it is really painful.

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Hi catwoman, how are things going now with your daughter? have you managed to find some relevant information on the internet? Look forward to hearing how you are getting on.

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Hi Catwoman. Sorry to say I don't have any answers but I'm reading your thread with interest hoping someone else will have. My own daughter is still only 12 but the description of your girl sounds very much like mine. She's just started Secondary school and is finding it difficult to break into new groups of friends after being with the same supportive kids at Primary who all accepted her and looked out for her (teachers too). Secondary is a whole different world and I know it will only get more complicated as all her peers enter adolescence and beyond. When she was little I could walk by her side and explain the interactions that were going on around her and give her tips on what to do but short of stalking her or taping a hidden camera to her head I'm a bit stumped as to what to do next! I've just been browsing Amazon and there are loads of books there on AS, many of which you can 'take a peek inside'. Perhaps if one or another of us finds a good one we can tell the other about it!

 

One that I did read some time back and thought had some good stuff in it despite being very Americanised was "Aspergirls".

 

Good luck x

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I have both conditions what your daughter has (Dyspraxia and AS) was officially diagnosed with Dyspraxia first in childhood (while still at junior's school!) Then years later I was officially assessed and diagnosed with AS in my early teens! Always knew with my family "something different" about me which didn't add up fully! I wasn't like "normal child"! I didn't have "full picture" some jigsaw pieces were "missing" as I describe it! As hard to explain put into words unless you've 'actually' been in that "reality" for themselves! When I "inform" people on the "outside" I have AS they are all taken back and shocked on how "well" I "cope" and "manage" and conceal mask my social /emotional difficulties and issues I suppose you adapt over the years not knowing what really going on what causing strange weird situations to happen! At least the process is rolling ahead now so should lead more answers of 'unanswered questions' you both still have outstanding! I always thought I was "unemployable". Thinking no-one 'want' me or 'have' me my issues would be too much of an issue! But I work p/t at a nursery happened by chance /opportunity through holding on in work experience volunteering through the college! Couldn't asked for better world place I'm grateful to have such understanding,supportive work place it's positive structure/routine in my life gives me sense of purpose /reason to wake up each morning!:)

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Hello Catwoman!

 

 

You share a very interesting story. I'm approaching 29 years old and was diagnosed with Asperger's Syndrome (AS) at 7. Like your daughter, I have an older sibling - a sister 2½ years my senior and she's my lovely desirable sweet little angel :D I'm sure your daughter's older brother means no less to her :D

 

 

I can fully understand where your daughter is coming from. I know what it's like to grow up as an Aspie and just how vulnerable this can truly make her feel. I've had my special needs disgracefully exploited far too often :angry: I've now endured enough sadism from people in general to last me a lifetime :angry: I can't count the number of people I've met in my time who I now wish I'd never heard of. Even today, there are very few people who make me feel more comfortable and less vulnerable :o I am yet to emerge from chronic depression :tearful: Developing into what I am today has been a very long and painful process! As far as I'm concerned, I've still got a very high mountain to climb! I do have high hopes for your daughter, nonetheless. I'm sure beyond all reasonable doubt that she has better opportunities for personal development than I had as a youth. I believe I can help prevent her from going through the same thing I've been through (on the negative side) and so further enable her to prosper in her chosen field. One of the last things in my books is for your daughter to inadvertently walk or fall into the same traps I did.

 

 

You can contact me about whatever you like, whenever you like.

 

 

Kind Regards

Gareth

 

P.S. You say you're a "trained early years teacher", so I thought you might like to know that my mum's a retired primary school head teacher. She did sometimes teach in the nursery of her last school. The children were so lucky to have had her appointed as their head teacher :D She is my world :D

Edited by Lyndalou
Edited to remove surname

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Thank you to everyone for your replies. I have bought 'Aspergirls', but have yet to read it fully. I was recently told that Rudy Simone the author of Asper Girls is to speak in Manchester on the 7th of March. You can book through www.autism.org.uk. I doubt I would be able to go, but it sounds interesting. Sammy Snake-it is interesting that your daughter is so like her Dad. Mine too!! My husband likes to give my daughter advice-it is usually blunt and honest!! There are times when Jen is happy, (or at least she appears to be) when listening to music or 'chilling in her room'. When I asked about this, she said that her room makes her feel safe as all her things are there including her 'walls', (currently a hobby to paste pictures of her favourite groups).

 

I suppose the hardest thing for me, is getting other people to 'understand her'. If you met Jen you would not think that there was anything amiss. My biggest worry is how she will feel when her friends leave college soon and only she will be left. Also, how to keep her occupied for the enxt year as she will not have as many lessons to attend. I may see if I could set soemthing up on my day off to take her to do some sort of voluntary work. That is easier than said though as I know she gets very anxious about new people and experiences. How do other people on here with Aspergers deal with this? My husband would just say to get on with it, and I must say that in some respects I agree. I do not want to encourage her to be 'useless' or to use Aspergers as an excuse not to try something which is hard. Any views on this?

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Blending into the background is hard work for us Asperger/asd folk. It means we need more space than so called normal people. I never use my ASD as an excuse it is a very logical explanation as to why we think the way we do.

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Thank you to everyone for your replies. I have bought 'Aspergirls', but have yet to read it fully. I was recently told that Rudy Simone the author of Asper Girls is to speak in Manchester on the 7th of March. You can book through www.autism.org.uk. I doubt I would be able to go, but it sounds interesting. Sammy Snake-it is interesting that your daughter is so like her Dad. Mine too!! My husband likes to give my daughter advice-it is usually blunt and honest!! There are times when Jen is happy, (or at least she appears to be) when listening to music or 'chilling in her room'. When I asked about this, she said that her room makes her feel safe as all her things are there including her 'walls', (currently a hobby to paste pictures of her favourite groups).

 

I suppose the hardest thing for me, is getting other people to 'understand her'. If you met Jen you would not think that there was anything amiss. My biggest worry is how she will feel when her friends leave college soon and only she will be left. Also, how to keep her occupied for the enxt year as she will not have as many lessons to attend. I may see if I could set soemthing up on my day off to take her to do some sort of voluntary work. That is easier than said though as I know she gets very anxious about new people and experiences. How do other people on here with Aspergers deal with this? My husband would just say to get on with it, and I must say that in some respects I agree. I do not want to encourage her to be 'useless' or to use Aspergers as an excuse not to try something which is hard. Any views on this?

 

One of my views on your daughter's needs is that the more caring and understanding people there are by her side and within easy reach of her, the more likely she is to proceed with genuine confidence and so reach a fundamental achievement. Personally, I simply have very little room on my conscience to leave her to fend for herself or risk her being disgracefully exploited by others, like I have been and, in a sense, still am up to half the time.

 

Kind Regards

Gareth.

 

RSVP.

Edited by Lyndalou

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How do other people on here with Aspergers deal with this? My husband would just say to get on with it, and I must say that in some respects I agree. I do not want to encourage her to be 'useless' or to use Aspergers as an excuse not to try something which is hard. Any views on this?

 

To a certain extent you have to get on with it, but just throwing someone in the deep end doesn't mean they will swim. A better strategy is to encourage more independence, one step at a time. Volunteering is something I'm looking to do, because working with people is something I find difficult - I need really understand people. I've just done my training to be a volunteer befriender for people with autism, its not something I would have considered before, but I like to help people online so i'm hoping I can do offline, even though its a big challenge for me. I'm also doing Work Choice through a local autism charity, to help me get back into work. I'm learning to be positive and put myself into situations I would normally avoid, and see what happens - see what I'm capable of. I think that's very important, that autistic people are given a chance to find their potential - but with help and support when they need it. You cannot 'snap out of' autism, its life-long, which can seem depressing, but its just a case of accepting you are what you are and need to keep working at things to get through life.

Edited by positive_about

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Excellent advice there positive_about, im a facilitator for a few social groups in the Bristol and Bath areas for autistics. I love my job but it is only voluntary at the moment unfortunately.

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Thank you everyone for all your comments. I am feeling very stuck today. My daughter was unwell last week and missed three days of college. I think she is probably better now but she would not get up for college today despite me offering to walk with her to the bus stop etc. We have been at this point before and it is so hard. She says that 'i don't understand' and 'how scared it makes me feel'. I know how uncomfortable it makes her feel but equally I cannot leave her to sty in her room for the rest of her life. I do feel that she was diagnosed and then left. We were meant to have follow up appointments but they need to be funded, and no appointments have come through yet. Today I am going to ring college to explain the predicament, and then see if I can chase up the follow up appointments.

 

I spoke to my husband about this, this morning. He says that he can remember ringing up work when he was a teenager to say he was ill, when he was not, in fact he just could not face going in. This is from someone who is hardworking and not woirk shy.

 

I suppose, this question is for all of you who have Asperger's syndrome, do you feel the same? How do you cope? Any idea how I can help Jen to go to college? My husband 'just got on with it'. My daughter finds that harder to do.

 

HELP!!

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I would chase up the funding that shes missing and consider contacting your councillor. Hope the conversation with her college goes well for you today. Also theres some literature about aspergers and adolescence and/anxiety. HTH

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I have learned to cope, well, cope better, by being my own 'life coach' - that is to say, I talk myself into things rather than talking myself out of things. Anxiety will affect most Aspies, and this can cause them to avoid situations that they might otherwise cope with. Avoidance is a simple strategy that works well for aspies, it reduces anxiety which gives them a reward. Change is a big problem for autistic people, they prefer familiarity and routine - anything that challenges that will raise anxiety. Aspies learn strategies to keep things the same, keep things manageable - so it will be hard to break out of the bubble and cope with new things, cope on your own, cope with people, etc

 

Part of being your own 'life coach' is to push and nurture yourself to do new things and see what happens, rather than avoiding things because you assume/predict what might happen. If I let myself, I'm very good at predicting ALL possible outcomes from a situation - thats the anxiety talking, you automatically assume you won't cope and something bad will happen. Thats why positive thinking helps, because it helps you focus on what might go right - what you might get out of the experience. Its not about positive brain washing, ie. delluding yourself you can cope with anything, or be amazing at everything, its about encouraging yourself to do difficult things and see how you get on, and learn from them.

 

Effectively, I've self-taught myself anxiety management - what can I think/do differently that will reduce my anxiety, before/during/after difficult things. With lower anxiety levels its possible to cope better. This does mean you expose your weaknesses, and if things go wrong you can crash, but thats probably normal - everyone can do something and have a bad experience, eg. failing a driving test, or messing up a job interview. Those that cope better simply recover quickly and try again, or accept its not for them and try something else.

 

Reward is also a big factor for aspies - doing something that you get a reward from will make it more likely you will keep doing it, hence special interests. Going to college may not seem rewarding enough, unless its related to a special interest - the reward of passing the course/qualification may seem too elusive or far away. Sometimes you have to add your own rewards to get through something, and sometimes you have to try something else that you might get the reward(s) you are seeking.

 

I would suggest spending some time with your daughter finding out exactly what the issues are, and maybe find out through your GP/CPN/etc. of there are any local anxiety management classes - or anything else that might help. Try all avenues, be open-minded, and be supportive.

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Thank you for your help. I have made a GP appointment for wednesday and have left a message for the psychologist to find out about the appointments. I am going to try to attend the Rudy Simone conference thing this thursday with my daughter if I can get tickets. I do spend lots of time with Jen trying to work out what her triggers are. She has actually agreed to go to college tomorrow now ('even though i hate it') due to her friend being on the bus in the morning. He is very good at escorting her to her first lesson. I have therefore worked out that one of the issues today, is having no one close to shield her into college. I agree that rewards are good. However, Jen is cutting herself off from so much so that it is hard to find a reward that will motivate her. Her current obsession/like is with an Amercian band who have no plans to tour(if so, then a promise of a ticket would be there!!)

 

I am going to cut and paste your advice Tim, into word and show it to Jen. I will let you know her reaction!

 

Many thanks.

 

PS jen is currently reading a book. The first one for a long time. Once she starts again, there will be no stopping her! (If you start a book, then you keep going to finish it on the same day!!)

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... diagnosed with Asperger's syndrome with dyspraxia in December. She has found it hard to come to terms with ...

It may take some time to come to terms with that knowledge. I know that I needed about 1 year - still, I was able to keep my job. I think you'll need some patience to help her through her "grieving" phase.

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I have been in similiar situation to your daughter walking away from situations rather than face them head on just easier to swerve when anxiety puts barrier in the way setting yourself little steps challenges has helped me gain confidence -move forward in positive direction! More your daughter stays in her "comfort safe zone" she will become set in pattern not willing to shift or move! I did voluntary work as was in bedroom most of day it gave me structure,routine and motivation ambition to seek future - encouraged me reassured me made me feel more relaxed I now gained part-time job from doing volunteering @ nursery enjoy what I do and on an annual contract as lunch time assistant! Feel I'm 'accepted' in part of a community/team! Best decision I ever made!my job suits me and my capabilities /needs! XKLX

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Good Evening,

 

Having researched the studies on Asperger Syndrome, one has to face facts.

 

People skills come from self confidence and self worth.

Friendships and relationships are extremely important.

 

When special interests become self defining, you need to broaden your horizons, in order to learn to ready body language and develop social skills.

 

Your daughter will also face naiveity from friends and peers, so its important for her to understand where she is on the spectrum and identify what support she needs.

 

A great book is Aspergers and Sexuality by Isabelle Henault.

Edited by trekster

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