Friends, Family & Carers Forum

[Unicornsearcher]

Hi, this is my first post ever and am thankful to be able to talk about my difficult situation.

My daughter, who has just turned 20, is on a community treatment order after being an involuntary inpatient for 11 weeks. She was diagnosed with Asperger's Syndrome, AS, when she was 8 years old and, even though very intelligent, has never succeeded at school because of her AS related difficulties.

In Jan 2013 she became psychotic and was an involuntary patient for 8 weeks and given a provisional diagnosis of bi-polar disorder. When she was discharged she was still far from her normal self and was angry with me and blamed me for all of her life's difficulties. This was reinforced by my mum and a sister who refused to believe that my daughter had AS (and still do).

My experience with the public mental health system has been very stressful as both times the treating psychiatrists have ignored her underlying AS - this was reinforced by my mother and sister who pretty well told them that I am an over controlling and manipulative mother - this despite the fact that I lived in a different state from them for all of my daughter's schooling which is where she had most of her difficulties when she was growing up.

So now I have my daughter being treated by a psychiatrist who refuses to acknowledge even the existence of AS let alone believing that it underlies her BP. He even told her gp to remove the AS diagnosis from her medical records.

I have absolutely no doubt whatsoever that my daughter has AS but like many highly intelligent girls with AS, she has been able to mask and mimic to get by. My 21 year old son has AS as did my ex husband.

I'm furious that this psychiatrist can care for my daughter when he holds such rigid, false, fixed ideas. He will have also told her case worker to ignore any reference to AS.

I have been my daughter's next of kin since the day she was born but during this admission, when she was an involuntary patient, her nok was changed to the sister who dismisses AS. This sister is not a good role model as she drinks daily for stress relief, has 2 children of her own with mental health issues who she does not give enough time to and has recently broken a younger sister's marriage up by having an affair with the husband. She sets no boundaries for my daughter and doesn't even supervise her meds. She reinforces to my daughter that I'm the cause of her problems in life and that she's best away from me.

I'm very scared for my daughter's future - at the moment she is like a completely different person, almost as if she has had a complete personality change and I wonder if this is how she'll be forever.

Apologies for the length of this post and welcome any insights from others.

[Alessandra1992]

This must be really hard for you. However, sometimes diagnoses are wrong. And if your daughter's psychiatrist is working with your daughter perhaps he/she may be right. It is quite scary challenging our views of the people we care for, but if it helps your daughter to recover her sense of self, and her mental health improves then maybe it is worth accepting this change.
I suppose what I am wondering is if you resist what your daughter is happy with, it is building a chasm rather than a bridge between you. Sometimes it is not about the diagnosis but how we love and affirm our children's progress. This won't be easy, but maybe through accepting your daughter's positive acceptance of her current treatment will keep your communication channels open.
Ignore the blaming language, you did the best you could with the information you had at that time.
I hope you can be hopeful that despite change of diagnosis, your daughter and you will find the best in life fe and love and happiness.. It takes a long time to regain mental health so patience is helpful. Try not to take your family's criticism to heart...and let time pass..

[Unicornsearcher]

Hi, Sandy, thanks for your thoughts.

The difficulty is that my daughter is not happy with anything, she doesn't believe she has BP either, she dislikes the psychiatrist and, basically has no insight into the dangerous lifestyle she is living.

AS has never been denied by her until my sister started putting the blame on me. The term AS was only ever used as a way of explaining to her why she found certain things difficult and thus giving her strategies to help her work out what she can do to compensate etc. She has never had the diagnosis used to define her as a person.

She has lived with high anxiety since she was 3 years old and

[Unicornsearcher]

Hi, Sandy, thanks for your thoughts.

The difficulty is that my daughter is not happy with anything, she doesn't believe she has BP either, she dislikes the psychiatrist and, basically has no insight into the dangerous lifestyle she is living.

AS has never been denied by her until my sister started putting the blame on me. The term AS was only ever used as a way of explaining to her why she found certain things difficult and thus giving her strategies to help her work out what she can do to compensate etc. She has never had the diagnosis used to define her as a person.

She has lived with high anxiety since she was 3 years old and starting school caused her intense anxiety and fear. She has a very poorly defined sense of self and found socialising very stressful. I have no doubt about the validity of the diagnosis - she was diagnosed by world experts, both a paediatrician and a clinical psychologist, and as my son had been diagnosed 2 years previously I knew from my reading that she was on the spectrum.

To me, not considering AS in her treatment plan and understanding her total persona is like a cardiologist ignoring that his/her patient also has diabetes. She never has to have the term mentioned to her but they need to know the implications of her having AS so her treatment plan can build in the necessary adjustments where necessary e.g. CBT definitely needs to be modified and executed with the accomodations that are usually needed for someone on the spectrum.

My daughter only goes to this aunt when she is going manic. I recognised the very early signs 3 weeks before her 11 week admission and myself and 2 other sisters tried to get her to her private psychiatrist but she wouldn't go because the other aunt told her there was nothing wrong with her, that she was just no longer depressed and that she should just ignore us. This led to her to being taken advantage of by a group of men and being listed as a missing person with the police for 2 days. The relationship with this aunt is truly toxic.

My daughter is still far from being her normal self and not much gets through to her at the moment. She was like this for a good 6 months after her first psychotic episode. Does anyone know whether this could now be a permanent state for her? Do people generally return to how they were before the psychosis/acute mania?

[NikNik]

Hi @Unicornsearcher 

Welcome to the forums.

I feel as though yourself &  @Impala are having similar experiences - different circumstances, but still the same feeling of not being able to help the person you care for. You can find @Impala thread here

You mentioned that your daughter was diagnosed with AS by a paediatrician and a clinical psychologist. I know this was some time ago, however, is there any possibility to connect these Drs with her treating doctors if she is admitted to hospital or goes to a specialist again? At the very least, are there patient notes that could be passed on?

I wish I had more advice on how to talk your daughter around to getting help. The advice we see time & time again between carers is that it's important to look after yourself. Not only do you deserve wellbeing, but it can also help you to be an even more effective carer for when the time comes that your daughter comes back into your life.

I know it may be hard to focus on yourself at the moment - but I hope you at least keep this in the back of your mind.

There are a few members who I think might have some thoughts to share @Camelia  @countrymum @Sarah-Jane 

[Unicornsearcher]

Thanks, NikNik - I now live in a different state from where my daughter was diagnosed. The clinical psychologist has been her clinician from when my daughter was 5yrs old until she was 12 when we moved state. I have kept in touch and spoke to him only a few weeks ago when he was here for a conference. He has offered to speak and advise the treating psychiatrist but I was told by the psych "that he wouldn't be contacting anyone". He really is quite arrogant and old school.

I will look up the other people that you said I may be able to identify with.

[Ann]

It can be so hard to feel that you are not listened to by those who are treating your child.

I find that it helps me to keep a daily diary of happenings when things are not going well with my son and present in person to the treating physician. This allows for them to read it and think about the daily happenings that the family are experiencing. I feel that unless we do this the doctors and support workers do not get a true perspective on how difficult it can be to live with someone who is suffering from the effects of mental illness.

Also consider getting a second opinion or asking to change psychiatrists or asking the attending psychiatrist if your daughter can be retested and stating that you feel that she is not getting appropriate care. Most of all, DO NOT GIVE UP, Keep Battling On!

Good Luck to you both.

[Alessandra1992]

It must be so frustrating for you when your daughter's psych won't even consider listening. Have you checked whether the service concerned has a carer consultant? And it may help to chat to a consumer consultant too as the key issue is for your daughter to get well, and for her, that may mean not identifying with her AS. That may change over time, but perhaps this is how her psych is building rapport and trust and trying something different..

[Sissy88]

Hello Unicorn searcher, I wanted to thank you for sharing I can relate completely to your situation. I think that half of my family have Aspergers and are bi-polar with depression, but sibling rivalry rules so much I wonder if it's a symptom? What you describe has been going on in my family for years, maybe generations. Interfering relations with their own selfish agendas exploiting those with Aspergers. Is it possible to seek a different professional who understands Aspergers? Get a second opinion?

[Shaz51]

Hello @Sissy88 xx

If you put a @ in front of the name @Unicornsearcher  they will received an email from you

Hello @Alessandra1992, @Ann xx