I have begun my diagnosis journey..failing already!
Even though she could have phrased in differently self-medicating behavior is one of the biggest risk factors for developing addiction. So I think she was right to notice that there might be a problem emerging.
Unfortunately, many MH professionals seem to latch onto the routine/ritual thing and push it as "obsessive compulsive". Before I'd even heard of Asperger's I'd been having therapy for months where we talked about "problems" such as me eating the same foods over and over again, only using a certain colour bowl etc.
btbnnyr
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Joined: 18 May 2011
Gender: Female
Posts: 7,359
Location: Lost Angleles Carmen Santiago
I wonder what she thinks if they had hearing loss as a baby so they it caused their speech delay? What if they had no troubles walking but they had a severe speech delay? What if they did have troubles walking but didn't have a speech delay?
I relate to this, every time I have tried to get help, I have also been told there is no treatment, so no point in getting undiagnosed. Been 2 years, and I'm still undiagnosed, it would be beneficial for my fecking peace of mind.
Im on the waiting list for treatment of social anxiety, well, theyure going to find out I have social anxiety becasue *drumroll* I can't do smalltalk! I cannot follow the required social concevention for forming new bonds, without coming across very strangely.
I can view people's expressions perfectly, I have anxiety becasue after the hundredth time, it is incredibly sould destroying seeing people avoid you becasue they think you are boring or weird.
I really admire some of the more severly afflicted here, I feel completely doomed, and you got more on your plate than I have.
The failing is with the NHS. I even E-mailed my local MP and guess what?
I'm still waiting a reply (4 months on)
The mood of the so called NHS is like the english weather!! !
I finally had a good session with a doctor on Monday however, this was not an appointment for my asperger traits
Good luck (I mean that too)
psychegots - I don't think I'd have the patience to sit with that woman again, just the thought of seeing her again fills me with rage. I'm waiting to see what my referral letter says, that should hopefully have some info on it. She also wrote down notes during the appointment that she said would go into my file, I could just make out from her terrible handwriting that she'd written obsessive and anxiety in almost every sentence so when I complain I'll be getting those notes from my file. I also don't think it's possible to sue her for malpractice, she would be able to cover her butt by saying she hasn't had any experience with adult asperger's, the most she'd probably get is a telling off by her manager which a letter of complaint will probably result in the same outcome.
gadge - Straightaway the BO thing made me pull a similar face to that smiley. I would have been so focused on that I wouldn't have been able to concentrate on any questions. Just like with the nurses nails, that distracted me for a good 10 minutes or so, that and when I first walked in there was an odd smell I was trying to figure out what it was but it slowly evaporated, it was definately some kind of food and I'll never know what.
Wow hanyo that's terrible, they have no right to make you feel bad like that, did you complain about them?
systematic - oh yes the stupid questions, I had to ask her a few times to elaborate on what she meant because there seemed no logic in why she was asking me them. Such as Do you find it hard to get up out of bed? I asked what she meant? So she said do I feel refreshed or like I needed to sleep more or what. So I rambled on and on about how it depended on the night before, how late I went to bed, had I been out that day, what time I actually woke up, if I managed to get off to sleep straightaway that there were too many variables for a straight yes or no. Her response..."well yes but generally do you feel refreshed or like you need to sleep more?" I just shrugged and said both depending on circumstances. I think maybe she should have devled deeper with you about the alcohol rather then just jumping to the conclusion of you having an alcohol problem but as psychegots mentioned maybe she was being cautious incase a problem was starting.
bumble - I had to leave my psychology course at college many many years ago because it was just too frustrating, it was also too crowded(which made me uncomfortable) but on the whole frustrating because I disagreed with alot of what was being taught.
btbnnyr - In an ideal world I'd do that but I'm just not an assertive person and I often draw a blank when trying to respond correctly, only afterwards will I be able to think of a million and one things I should have said. That's why I tend to take my husband with me to things like that, he knows when I'm getting upset and will start shouting at people for me but he hasn't really read anything about Asperger's to know when to tell people they are wrong in their misguided views of it. He's listened patiently whilst I've gone on and on and on about it but he hasn't researched it at all. He was also biased in the appointment anyway, he knew she'd be a pile of crap so he knew there was no point arguing with her.
league_girl - by the nurses logic they wouldn't have AS, you have to have both apparently.
Morph - I hope you too can find some help too!
Az29 - I'm sorry you are having all this difficulty. I am also trying to get a referral on the NHS and i also had to see a community health nurse. I went with my husband and the woman just immediately got out a notepad and started asking for my name and age and stuff! I said to her, "Why am I here?" She looked at me blankly, so I said it again and said that I was looking for someone to diagnose if i had an ASD. She just went blank again and then said that there was no point continuing with the session, and that was that!
Some months later I had calmed down enough to see my GP again and she told me that there is no path for adults to be referred to get a specific ASD diagnosis. Apparently, you have to see a community health nurse, get listed for an anxiety disorder or depression, have at least three sessions with the nurse and then, if you are lucky, get referred to a psychiatrist, who may not even have an autism speciality. This is because autism is listed in our NHS primary care trust as a mental health issue for adults, but as a developmental issue for kids...go figure!
I told her that the Autism Act makes it a statutory requirement for all councils to have an adult ASD referral system in place and gave her a list of people in the area who are able to diagnose. She apparently gave the list to her secretary to deal with. I am still waiting........
I had almost 12 months of CBT in 2010 for /depression/anxiety/low self-esteem. At the time I felt that the psychiatrist had not quite hit the nail on the head and that they were just symptoms rather than the over-all cause of my problem but I perservered and was "discharged" in December 2010. Lo and behold I had another episode last year that was much worse than the problems that led me to therapy in 2010.
In Spetember last year a doctor who conducted an occupatoipnal health assessment on me (and therefore took the time to ask questions and listen to answers) suggested that I should go back to my GP as she suspected I had an ASD and would benefit from a referral to a clinical psychologist.
I had never even considered this before and after doing extensive research (my itense concentration and obbsessive aspie traits really helped here) I decided there was something to what the OH doctor said and went to my GP. The local mental health team (who had previously treated my symptom) didn't want to know because I am an adult and I just found out yesterday that a direct approach to the PCT for funding for an assessment will not even get off the ground. I'm going to have to find the money to get a private assessment (thinking about the Dilemma Consultancy in sheffield - does anyone have any experience with them?) and I'm left wondering just what the hell I am paying my taxes and National Insurance contributions for when I can't get help when I really need it.
It seems to me that even my GP has little or no knowledge about these things and I'm the only one driving this forward. Very frustrating indeeed.
D
_________________
Your Aspie score: 157 of 200
Your neurotypical (non-autistic) score: 50 of 200
You are very likely an Aspie
Can't really help, other than to observe that our political and economic systems are seriously messed up from the foundations, and you have my sympathy. But off topic I just wanted to note that long ago I lived in Lichfield (Wiliams Avenue) and loved it. Of course, I was seven, and extremely happy (I did not start getting depressed until aged nine), so that probably helped.
You have my sympathy as well. I am mainly anti-psych for the reasons you've elucidated in your post. Also, I'm fascinated by the number 3, in fact, I do things three times without even realizing it and this is HUGE, if it was OCD, I'd think, have to do it, one, two, three and whatever--- there'd be some conscious thought behind it. I just do it and then notice it later or when someone points it out.
Try to get yourself a Neuropsychological evaluation. I don't know how it is in the UK, but in the US if you have insurance and a primary care physician, you can basically ask for any testing and the grounds for me was that I was having trouble in school, was dx'd with ADHD as a kid, and as an adult, need to find out if this is what is holding me back, yada yada yada...
Kinda gotta politic these people and that's extremely hard for persons wt ASDs. Anyway, be direct, persistent, patient, and over all that, become educated about psychology in general so that your natural intuition you've shown in your post will also guide your treatment because you'll know what to tell these people and what not to, kinda steering them to the diagnosis you want.
Also, I don't know how it goes in the UK, but in the US, second opinions are king! If you can afford to get another doc to look at your records maybe that would help?
I think this is bad advice. If someone don't know what they are doing, then get your stuff and leave. Find someone who knows their profession and get them to evaluate you. By following kirayngs advice you risk two things;
1: You get to a good professional, who is also trained to detect if someone is "steering them to the diagnosis you want" and he puts it in your file that he suspect you have Münchhausen's or are trying to commit fraud. You really don't want that.
2: You get another could not care less (or stupid) professional, you "play" him/her and you get diagnosed with Asperger's. But guess what, you might have read about it, you might know yourself, and still you might be wrong. So you end up with the wrong diagnosis. You don't want that either.
That is very similar to my story. My GP was supportive but I'm let down by my local mental health team who offered me CBT or nothing. I live less than 2 miles from the Maudsley which right now as far as I know is the only place in the UK to offer the MRI diagnosis. This was flatly refused as indeed was any referral to the Maudsley who have staff experienced with ASD whilst my local mental health team do not.
She didn't want to know at all, didn't even mention my calling out or my social problems, she glanced again at my printout (which is basically the same as this post link) and asked about how certain words make me feel when I say them. I said it was hard to describe that they just make me feel wrong and weird and I can almost taste them and my mouth feels just yuk, then she started asking if I was worried about vomitting or others vomitting near me...what?! At first I thought maybe she was about to puke or something so I looked to my husband for guidance who half shrugged and I just flatly replied no.
She was really pushing the OCD, asking about routines, my husband chipped in that I like my routines and plan everything, so she said "Oh..and what if things don't go to plan then?" I told her I get kind of upset or edgy and anxious but it depended on how much things changed or didn't go to plan as to how severe I might freak out, it was like I just screamed the word anxiety at her and she nodded and said "Oh yes definitely OCD and anxiety...right so I'm going to refer you for help with your OCD and anxiety..."
She also came out with some classics such as "what's the point in getting diagnosed when there is no treatment?, it's pointless"....yeah maybe to you! But not to me, I would like to know if I have it, so I can maybe understand just a little why I act / think / feel this way. Also apparently if I had it I would have been referred by my school as a child...okay so in the late 80's early 90's Asperger's was so well known not only with doctor's but throughout schools<-sarcasm. I did mention that I did not speak in school throughout my entire primary (elementary) school time (which was due to me taking the term learning not talking in school too literally) and that one teacher asked my mother to take me to a psychiatrist because something was clearly wrong with me...that was met with half a smile and the nattering on about OCD again.
I also mentioned my daughter that I was concerned she may have it too (post about her here), apparently all kids have obsessions and hate tags and certain fabrics...what to the point of crying hysterically over them? Her reasoning is that if my daughter's school life is not suffering then leave her alone, if she starts having problems in school then take her to the doctor's.
My husband did warn me this would happen though, he knows just how bad the mental health care system around here is (not just from personal experience) his best friend used to work for them and quit because he was sick of being forced to misdiagnose people to suit targets. That it was a case of right we have a budget of £££ we have X amount alloted to Anxiety disorders so lets try and focus on that this month, if someone shows any sign of anxiety then label them with an anxiety disorder so we meet our targets.
I'm so angry, it took me all afternoon/evening to completely process everything that was said in my morning appointment and I'm really upset by one thing she said about me and my daughter. That any problems she may be suffering from are learned from me and my OCD / anxiety disorder rather then it being any underlying condition. At the time I didn't completely get what she was saying but now I've had time to process it I get what it is she said to me, that I'm screwing up my child because of how screwed up I am...wonderful because I don't already feel bad enough!
I just feel so down about it all and like the nurse was laughing at my problems and not taking them seriously and was focusing purely on the obsessive traits rather then taking on board everything combined. I wasn't expecting her to say oh yes you have AS but the way in which she quickly jumped to a conclusion of OCD from the first paragraph of my 3 page printout just because it mentioned my hand patterns and the fact I was obsessed with the number 4. If she'd have read down just a little she would have seen the bit that says the hand patterns are not as bad now but the verbal problems have increased. Not once did she ask me about my noises / vocal outbursts so I know she did not read it properly and just focused on one thing which as my husband rightly stated is more easily treatable (probably pills and CBT) then something as complex as AS.
Oh and for any of you who ARE diagnosed if you did not have severe problems with walking / talking as a baby then you DO NOT have AS <-logic of that stupid nurse!
This is basically what happened to me when I went to the state mental health office. I took in my previous childhood diagnoses for ADHD, along with information given me by my school, and they did a bunch of paperwork, didn't even photocopy my papers I brought in, and then sent me to talk to the shrink. He talked to me for less than 10 minutes, decided I had Bi-Polar disorder (even though I do almost nothing self destructive.. EVER) and prescribed me an extremely powerful anti-psychotic, and scheduled another appointment in 6 weeks. I was in the Emergency room within 3 weeks related to the anti-psychotic, and then they refused to treat me any further because I had refused to take my medication.
Yeah maybe but when i asked my GP he basically laughed at her statement.
I currently have a new annoyance The DWP. failing people on there assesments to meet targets and on appeal around 60% win the case. would love to hear any ones views on the atos medical team who carry out these assesments.
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