Daughter just been diagnosed!

[Caron_1708]

Hello, I’m new to this forum - my 25 year old daughter has just been diagnosed with Aspergers. I would like to share my experience of the struggles I am experiencing as her mother and would welcome any support out there.

She has never had a job, has no friends and also has clinical depression. She was diagnosed as having social anxiety in her teens by CAMHS – never once did the so called health professionals suggest autism. The past 2 years have been awful. I feel she has got worse. She is under the GP for her depression but all they do is dish out antidepressants - she has difficulty expressing just how bad her depression is.

I am hopeful now she has the diagnosis that she has agreed to enrol on a learning programme to get her back into education. Whether she sticks at it is another matter.

She is very isolated and spends most of her time alone in her bedroom. Me and my husband are at work in the day and I feel so guilty leaving her. She is completely dependent on me and my husband. She has no friends and we have no extended family apart from our son. We are the only 2 people she gets to talk to. She spends a lot of time sleeping and tends to sleep more in the day and up at night. She spends most of her time on the internet – I’m not quite sure what she gets up to on her computer. She used to draw a lot and do creative writing but these days her interests include unsolved crimes and just lately environmental issues. She gets extremely short tempered and it doesn’t take much to upset her. I’m not allowed to ask her how she is feeling – to her this is an obvious question and occasionally I have let it slip out only to endure hours of lecturing from her how bad her life is. We have had to learn to be extremely patient with her. If we go out anywhere she cannot be rushed and we have to allow her more time than the average person to get ready. She gets extremely agitated if I so much as cough or pick my nails. I have to refrain from doing it in front of her. She doesn’t allow anyone in her bedroom. If we want to speak to her when she is in her bedroom we have to talk through the door. I have to arrange all things like doctors/dental appointments for her. She claims disability benefit.

It breaks my heart seeing my daughter like this – so many wasted years. We went through an extremely bad patch earlier this year – her depression took a turn for the worst and she was being extremely pessimistic. During this time she had mentioned she was having suicidal thoughts. One particular night me and my husband had an argument which upset my daughter and she locked herself in her room. We got very distressed because she wouldn’t respond to us so we had to break into her room to check she was OK – she went absolutely ballistic! We couldn’t calm her down so called the emergency care services only to find they had referred the call to the Police. She was arrested and taken down to the police station. I think it is absolutely disgusting that this happened. My husband sat outside of the Police station all night waiting for her to be released. They locked her in a cell – apparently for her own protection – to do this to a mentally unstable person is beyond me. She shut herself in her room for weeks after that incident blaming us for what happened. I cannot bear to ever go through that again.

On a good day she takes the dog for a walk and we enjoy playing board games with her. She sometimes comes out with us for meals so I guess it’s not all bad. I asked her what her hopes for the future are and she says she hopes that one day she can become independent from us and live on her own. There is nothing I could wish for more – it’s like she is still a child and has never learnt the skills needed to become independent.

Thanks for reading XX

[bowlingbun]

Hi Caron,
Welcome to the forum.
I can't understand how your daughter reached 25 without a proper diagnosis, so many lost opportunities.
My son is 38, brain damaged at birth, but that wasn't diagnosed until he was 8 years old. Until then I was labelled a bad mother!

[MrsAverage]

Hi Caron and welcome
I have a 22 year old son with some sort of anxiety/self esteem/depression issues so a lot of what you say echoes him. Howevet I also have another relative who is diagnosed Aspergers with some other mental health issues too and what you said resonates more with his behaviours.

With my son we have found to go slowly building on any glimmer of interest or expertise to build self esteem. For example he likes eating and so we encouraged cooking, starting small but encouraging and praising all the way. He needed a lot of support at first but has now built up the skills to do the entire weeks meal planning for all of us. He also has free reign within a budget and eventually, has learned to drive so he can now do the shopping too. This took 2-3 years.
Essentially with him we keep stressing the skills he needs to gain independence and to be adult, and as far as possible, to treat him as an adult. This means him living with the consequences of his actions. He has to live within his jsa and still pay us half to cover his living costs etc. He has to pay his car insurance for example.

However my relative is a different kettle of fish. He too likes eating but doesn't see why he should cook when so much is daily deliverable. He can do excellent maths but cannot understand budgeting to stay within his means. He would not be be able to drive because he would always be thinking of something else. He get every fixated on certain subjects, at times to the exclusion of anything else. He is unlikely to be able to live independently as he needs prompting at lot, but in the right way!

So, it's best you start researching whatever you can on your daughter's various diagnoses. The autism organisation is very good and may have a local group for you.http://www.autism.org.uk/services/helplines.aspx
There are also very good books on the subject. Life with someone in the spectrum is easier if you learn how to communicate best with them. A key problem is that some won't recognise they are different -indeed they see themselves as right and the rest as different. Some contribute to a publication called the Aspergers united which I find a fascinating insight to how differently some minds can work.
http://www.autism.org.uk/about/adult-li ... rules.aspx

Life with some one on the spectrum can feel like walking on eggshells all the time. But it can also be funny, enlightening and coped with.
I hope this most recent diagnosis helps you help your daughter.

There are several parents here on the forum and you may find reading previous posts helpful too.

Kr
MrsA

[Caron_1708]

Hello and thanks so much for your rely. It sounds like your son is doing really well and if he enjoys cooking he could look at going into this as a job eventually. Its my daughters depression that really bothers me and the amount of time she spends in bed. At least there is hope now and some things in the pipeline. She has mentioned she wouldn't mind learning french and I have offered to go with her to an evening class. She is worried it will be like school again but now she has the diagnosis the tutor will have to take her condition into account. I have even suggested she gets some private therapy but she is reluctant to do this. She doesn't have any motivation to do anything at the moment. We try our hardest to coax her out of bed but she just gets annoyed with us so we have to leave her alone.
She did actually pass her driving test going back 3 years ago. Things were not as bad then but she has never seen the point of having a car because she doesn't go anywhere. She gets benefits but hardly spends any of it apart from giving me some money towards bills. Shes very lazy but I guess this is to do with her depression. Its very hard. Thanks again for your reply. I'll have a look at the links you sent.

[MrsAverage]

Hi Caron
I find with my boy, and its a popular phrase on the forum, that its a fine line between supporting someone to move forward and enabling them to stay the same.
I had to be strong to stop doing things for him that he could do for himself, and that included cooking, laundry, . I created tasks for him that get him out of the house, posting a letter, buying an item, finding out something etc until doing things and going out became normal.
It's too easy these days for them to stay in and do nothing so i see creating jobs and building esteem as 'supporting' whereas 'enabling' would mean doing everything for him or allowing him to hide.
I know your daughter's reactions may be different but how much is depression (where she is so low she cannot even contemplate doing anything) and how much is habit/laziness/enabled? Are you sure she is taking the antidepressants? Questions for you to ask yourself rather than answer publically .
As I said before depression and Aspergers can look similar but both benefit from clear rules (imho!l)
TonyAttwood does good books on aspergers/autism
Hoping some other forumites with more experience ofAspergers join in soon
Kr
MrsA

[Caron_1708]

Yea your right about the creating jobs for them - thing is she does do her own laundry to a fashion - doesnt iron anything and nothing goes on hangers - basically no effort put in to it. If she is around she will help help me put shopping away and stuff but its not enough.
Im really hoping that come September she starts a few courses. Its only a few hours a week but it gets her out. Its hard cause I am at work during the week and because she is sleepig during the day at the moment its not worth me asking her to do anything. I used to ask her to walk the dog but she has told me not to as I sound like a stuck record - I can't win sometimes. She really is a strange one!

[Melly1]

Hi Caron,
I care for S, he is 25 and has classic autism, related learning disability and various health issues that are aggravated by anxiety. In his mid teens he became very anxious and had panic attacks and taking him out was very difficult. We worked through it and now he enjoys going out again. It isn't always easy to motivate him, but he is good at helping out around the house, goes to the Life Skills follow on service at his college, various clubs and has several special interests. Like Mrs A's son, food is important to him and he loves cooking.

I agree re finding reasons/ excuses to get your daughter motivated to do things. I do this with S. Walks to the postbox, buy a special ingredient for a recipe, trip to the shops for something that has run out/ that he needs etc. (Sometimes this is real, sometimes engineered.) could be anything even the TV remote needs new batteries etc

The problem with autism is a new behaviour or way of doing/ not doing something can become a habit very quickly. S can make a habit out of something that happens just once! Sometimes totally changing the routine can instigate change.

Let natural consequences occur and think how your daughter's interests and preferences can be utilised. There are some great apps out there for helping those with autism (and neuro- typicals) structure their day. S does well with a list which he ticks off, it will include some routine things e.g meals/ chores and then some points are for choice making each going out/ favourite activities at home etc.

There is an article in the NAS magazine this quarter by someone with autism who tells how re- engaging with art has helped them express themselves and get over depression. You contact the National autistic society and ask them for a copy of the article or better still join it too.

Melly1

[sunnydisposition]

Hello, I’m new to this forum - my 25 year old daughter has just been diagnosed with Aspergers. I would like to share my experience of the struggles I am experiencing as her mother and would welcome any support out there.

She has never had a job, has no friends and also has clinical depression. She was diagnosed as having social anxiety in her teens by CAMHS – never once did the so called health professionals suggest autism. The past 2 years have been awful. I feel she has got worse. She is under the GP for her depression but all they do is dish out antidepressants - she has difficulty expressing just how bad her depression is.

I am hopeful now she has the diagnosis that she has agreed to enrol on a learning programme to get her back into education. Whether she sticks at it is another matter.

She is very isolated and spends most of her time alone in her bedroom. Me and my husband are at work in the day and I feel so guilty leaving her. She is completely dependent on me and my husband. She has no friends and we have no extended family apart from our son. We are the only 2 people she gets to talk to. She spends a lot of time sleeping and tends to sleep more in the day and up at night. She spends most of her time on the internet – I’m not quite sure what she gets up to on her computer. She used to draw a lot and do creative writing but these days her interests include unsolved crimes and just lately environmental issues. She gets extremely short tempered and it doesn’t take much to upset her. I’m not allowed to ask her how she is feeling – to her this is an obvious question and occasionally I have let it slip out only to endure hours of lecturing from her how bad her life is. We have had to learn to be extremely patient with her. If we go out anywhere she cannot be rushed and we have to allow her more time than the average person to get ready. She gets extremely agitated if I so much as cough or pick my nails. I have to refrain from doing it in front of her. She doesn’t allow anyone in her bedroom. If we want to speak to her when she is in her bedroom we have to talk through the door. I have to arrange all things like doctors/dental appointments for her. She claims disability benefit.

It breaks my heart seeing my daughter like this – so many wasted years. We went through an extremely bad patch earlier this year – her depression took a turn for the worst and she was being extremely pessimistic. During this time she had mentioned she was having suicidal thoughts. One particular night me and my husband had an argument which upset my daughter and she locked herself in her room. We got very distressed because she wouldn’t respond to us so we had to break into her room to check she was OK – she went absolutely ballistic! We couldn’t calm her down so called the emergency care services only to find they had referred the call to the Police. She was arrested and taken down to the police station. I think it is absolutely disgusting that this happened. My husband sat outside of the Police station all night waiting for her to be released. They locked her in a cell – apparently for her own protection – to do this to a mentally unstable person is beyond me. She shut herself in her room for weeks after that incident blaming us for what happened. I cannot bear to ever go through that again.

On a good day she takes the dog for a walk and we enjoy playing board games with her. She sometimes comes out with us for meals so I guess it’s not all bad. I asked her what her hopes for the future are and she says she hopes that one day she can become independent from us and live on her own. There is nothing I could wish for more – it’s like she is still a child and has never learnt the skills needed to become independent.

Thanks for reading XX

Are you aware of ...
http://www.challengingbehaviour.org.uk/ ... ilies.html
I am afraid it sound like back to basics. It's like starting again from a small child. Taking back control. Firm boundaries - all hard work. Everyone has to adhere to rules and boundaries. Clear expectations on house rules.
It interesting that there are times your daughter can join in and take responsibility. So there are triggers that set of behaviours. Sometimes other people see these before we do. I am not so alarmed at the police being involved. This although it can be painful having any child/adult dealt with in this way. I know of families this action has helped. Although the web site above is for sever learning disabilities. There are techniques that can be used with others without sever learning.
http://www.challengingbehaviour.org.uk/ ... urces.html
It does sound to me at the moment. The only consequence you have to hand is contacting social services for help. Who called the police as your daughter is an adult. She has to understand if she displays threatening behaviour. Putting herself,you and others at risk. Currently, the only alternative until you agree an alternative safe solution. Is the police will be contacted.
It would be good to know. What was her response following in stay in the police station.

[Penny]

My daughter is 34 and was only diagnosed with Aspergers about 2 years ago. She also has learning disability. She has caused us endless worry and concern but about a year ago she found herself a boyfriend and things aren't so bad. I actually think he is undiagnosed Aspergers as he is so like her in many ways and he also went to a special school.

She has never had a job and was terrible to live with until she got a boyfriend. It is very isolating and they take all their anger and frustration out on their parents of course.

However, this past year I have had the year from hell with my 93 year old Mum who has Alzheimer's and has needed massive help, gone into care, not been happy and now looking for new care home.
I am afraid my daughter and her problems have had to take a back seat.

Does you daughter have a personal budget. It really helped us when my daughter got one and then went on to get a PA to take her places and do things together. Xx

[Kaiden_1807]

Hello, I recently come across this discussion whilst searching for funding and grants as a full-time carer for my wife.
I also happen to be a writer in my spare time, and I am currently doing research on Autism. I have spoken to a number of parents with autistic children and adults that have autism, via some social media sites. However, I am looking to speak others that would be willing to exchange brief notes.

If you would like to know more about my writing and my research, then I would appreciate any feedback.


Regards. Kaiden G. Stone