Hello everyone,
I've been here a few times over the past couple of years and my daughter Amy is now 17. A few of you may remember me posting.
We still havent had a diagnosis on either Autism or Aspergers, we have however been attending appointments for Amys periods of disassocation / derealisation which they say is anxiety related. Shes been having CBT (Cognitive therapy) for the anxiety.
Amy has also been suffering very high and low mood swings, being almost euphoric one minute to withing an hour or so being very teary.
She cant understand what is happening to her and its so distressing. She has in the past and still suffers with noise sensitivity and tones, which can make her have panic attacks.
Her therapy sessions i feel are helping a little but in another way, nothing is changing. Its probably helping her to talk, but she's still having anxiety, disassosiation spells.. and everything is as it was.
Amy also has a kind of obsession about her possessions, ie phone, laptop, no one is allowed to touch them. Laptop was in for repair when it stopped working and it took a long time to get it off her to get it sorted out. Same applies to her phone, it needs looking at, she wont let anyone touch it, let alone get it in for repair. My eldest daughter who is 22 is extremely good with Amy, and has finally coaxed her into going with her and getting it sorted (hopefully) at a shop with her present and hopefully the phone wont be sent away... (fingers crossed) not sure how to deal with this side of things to be fair.
She has a Social and Interaction problem which HAS been picked up on and also Processing of information Skills.
She has had problems all her life from being small, ive asked for help so much, the school were no support at all, saying "Amy is a shy girl, who gets on with her work" which is all they basically want, lets face it! a model pupil!
I paid for private tuition to get her through her GCSE's which she did fabulous on and we are so proud of everything she has achieved throughout her school years. She had terrible friendship problems, which she overcome, extremely stressful at the time as she was classed as "different" and was treated as such. She has one friend (who comes and goes in her life to be fair).
Amy appears "normal" (sorry dont want to offend anyone here) this is just how im writing it, no offence intended...
Amy appears normal, looking at her, no obvious signs of autism on appearance etc or even first talking to her, she would only appear as shy, which is why probably she has slipped the professionals by and they wont or wouldnt listen to me! Amy is extremely good at masking problems and "getting by"..
Ok, this is where we are at now:
The therapy sessions where Amy attends is going ok, she has 3 remaining, but i dont think we are any closer to getting anything sorted out. She still has the anxiety, she still has dissassosiation, none of her traits have gone, which obviously wont, she still has social and interation problems, still has noise/ sometimes smell sensitivity, still has a processing of information problem.... so where do we go from here!?
The therapist as i said said we have 3 sessions left, she agrees there are definite Aspergers signs and traits and i have asked on a few occasions about a firm diagnosis for autism or aspergers and the therapist said she can refer us for diagnosis, but it has to be on Amys terms as she's 17 now and she said, "DO WE REALLY TRULY WANT A DIAGNOSIS at this age, when she's gone through her school life and DO WE REALLY want to put this label on her so to speak". She said "I CANT SEE WHAT YOU ARE GOING TO GAIN BY KNOWING..." (what are your thoughts and opinions on that please, would we gain by it, or rather would Amy gain by it? would she get other help etc in life, would it help her?)
Therapist said if i referred you now, then these sessions would stop!... she said, she'd be diagnosed and THATS IT!, she wouldnt get any more help with anxiety, it would be a diagnosis and that would be the reason of it all, so no more help is available.
is that true??
I'm at a point now where i dont know whats best!
do we go for the assessment!? - do i wait until we are almost at the end of these sessions, bearing in mind only 3 left, then ask for assessment. It has to come from Amy though, apparently, and to be honest she wants to know herself "WHAT IS WRONG WITH ME" as she says.
I cry with her, i console her, i'm also very strong for her and cry alone, wondering why on earth i havent been able to get to the bottom of this for years. I almost got somewhere when she was around 9 yrs of age, but then it was dismissed. I contacted, schools a lot voicing my concerns etc, totally dismissed.
It took until she was suffering extreme anxiety during her GCSE's and onwards to get this help and to the point we are now. Shes now at college and its rearing symptoms there now, the friends she started with are still there but i sense they leave her at times, though she's cagey about it and i dont know the full extent. She hates presentations etc, and thankfully the therapist has been in touch with the college, but its still a little bit of a problem. She had a disassociation episode last friday when she couldnt understand the lecturer and what he was discussing then panicked in case he asked her a question, WHICH HE DID, IN FRONT OF THE CLASS, and she couldnt answer which made her worse....
She wouldnt go to college monday. :(
Shes gone back yesterday and today and seems ok (ish) for the time being.
OK, would she benefit with a diagnosis?
I worry when I'm not here to help her, that she has nothing to back her up!
Jobwise, I worry she wont ever get a job, she cant use the phone, I worry if she got an interview - she wouldnt cope... she needs me with her through so much, doctors, dentists, hospital, bank, and numerous other things, she just cant deal with them alone.
sorry to go on - I would appreciate (yet again sorry) your responses and thoughts on this.
Would she get help after diagnosis? Do we need it? Would she benefit?
I'm at my wits end with it now, I feel so torn and just want to do the right thing.
Thank you so much for reading this,
Denise x
