Adult diagnosis pros and cons???

[FlorenceD]

I'm a 27 year old female currently working full time in childcare. I find being at work for so long in a day (up to 10 hrs) very stressful.

 

I posted in the greetings forum already introducing myself properly and explaining my 'issues'.

 

I have made a drs appointment for this Friday and am really anxious as to whether or not to take my list with me and discuss my struggles again. I'm seeing a different dr this time in the hopes of getting a new perspective on things. The thing I'm most worried about is that maybe they will say there's nothing wrong with me or that its all in my head.

 

I haven't discussed any of the things on my list with my parents. I have a difficult relationship with my mum (although I do still live at home) and I don't trust her enough to talk to. I was signed off work due to stress in december and as soon as I went back to work, my mum acted as if everything was fine again and that there's nothing wrong with me. She tells me sometimes to 'just get over it'. She's really not understanding at all and I don't think I could rely on her if I did go for diagnosis and they needed a parents point of view.

I get on well with my dad but again he doesn't understand me at all. Hes always commenting on my behaviours especially my OCD ones and it makes me self conscious although obviously he doesn't realise this. My 8 year old nephew has Asperger's among other things and neither of my parents get him which means that they really don't get me either.

 

I do have some support from my older sister as she has my nephew and recognises alot of his behaviours in me. She has alot going on at the moment in her own life so I don't like to offload on her too much as I know how tough shes got things right now.

 

Should I discuss things with the dr friday or not? What made you go for diagnosis or not? What have you found to be the pros and cons of this?

 

Thanks

[Livelife]

There are a lot of issues that you need to consider here and I'm sorry your having a difficult time at the moment what you describe is very common which is unfortunate for everybody.

The thing you have to ask yourself is why you would like the diagnosis how do you feel you will benefit from it. There is benefits and help but even that depends on the area your in an how easy it is to get to the centres that support those with Autism.

Before you go to the doctor I would contact the National Autistic Society they are the best people to talk to initially they can give you a lot of advice you won't get from the doctor. They will also send you a information pack including a letter that you take and give to your doctor at the time of your visit. That would be the best way to begin then you can discuss your list after he or she has read this then they can see the link between your traits and a autism. A lot of Doctors will not see this they should but they don't, it will be stress depression or even social dysfunction it is a lottery as to the doctor you see. That would be the first thing to do, do not see a doctor until you have this letter, I've had this experience it's worth doing for your own sake take the time to contact the NAS.

How sympathetic is your employer to others with disabilities what is there level of support, how long have you been working there what's your relationship like with your immediate supervisor and manager.

I was employed for eight years plus but within a year of my diagnosis I was dismissed on the grounds of incapacity, its important to know there will be employers who understand and will help and not all of them are the same. You can still have the diagnosis and not tell your employer there is no law that I have ever discovered that says you have to, you need to consider it because even though you should not need to even think about it people will discriminate against those on the spectrum it doesn't matter about regulations it still happens. Would you be able to fight a discrimination case go through meetings and hearings, I'm not trying to put you off doing this it's something that your not really told could happen and trying to make you aware of its possibility.

There are many levels of Autism and it's clearly in your family history so it's possible that either of your parents could be Autistic as well maybe it's gone unnoticed because it's not as bad as yours do they both have jobs with no issues good social lives with friends outgoing and confident.

It's not going to prove anything but if they don't have that kind of life can you see any traits be them less than yours maybe that show they struggle in anyway. It's very difficult to make a judgment and I wouldn't say anything to them even if you could see anything that would indicate this especially now.

It could be why they don't fully understand themselves or maybe even be afraid to face something they already know it's a hard decision to make or even understand.

I know this because I have been in your position and even though my father has passed away from what is now known about Autism it's all most certain he was autistic and went his whole life without knowing while still having the same problems it was just that nobody knew or cared enough to do anything about it.

Until you have contacted the NSA and had your appointment with the doctor I wouldn't make any decisions. You could go to your local Autistic support group when they meet and speak to the councillors there in private they will be able to give you much better advice than I can.

I am relating my own experience and yours may be different but I would consider your options carefully, I would get the diagnosis without any doubt knowing is very important for you. How you proceed after take time to decide, that's the best advice I can give you, hope it is of some help.

[Livelife]

Sorry towards the end I put NSA I meant NAS the National Autistic Society, got myself confused there.

[Mihaela]

I have made a drs appointment for this Friday and am really anxious as to whether or not to take my list with me and discuss my struggles again. I'm seeing a different dr this time in the hopes of getting a new perspective on things. The thing I'm most worried about is that maybe they will say there's nothing wrong with me or that its all in my head.

 

Should I discuss things with the dr friday or not? What made you go for diagnosis or not? What have you found to be the pros and cons of this?

First, please read my earlier post to you this morning.

 

You must insist on your GP referring you to an autism specialist (a general psychiatrist isn't good enough). It's your right to be assessed for a diagnosis.

 

I was signed off work due to stress in december and as soon as I went back to work, my mum acted as if everything was fine again and that there's nothing wrong with me. She tells me sometimes to 'just get over it'. She's really not understanding at all and I don't think I could rely on her if I did go for diagnosis and they needed a parents point of view.

 

The stress won't go away, unless the causes are addressed and prevented. I know a self-diagnosed 12 year old, who has similar problems with her parents, wh tell her 'toughen up'! She can't and never will, due to her AS. Like you she feared being told that it was 'all in her head'. Her specialist (a paediatrician who specialises in digestive disorders!) agrees that she has the traits, but is reluctant to give a written diagnosis for the fear that it may affect her school work and future employment. This is not good, for it panders to NT values and thinking. Anyway, employers should only be made aware of an ASC diagnosis if the person wishes it, and feels it will cause necessary adjustments to be made (as under the Autism Act). My friend has had the same trouble with her mother - who influenced the specialist's decision. If your parents aren't supportive it makes things a lot more difficult.

 

I get on well with my dad but again he doesn't understand me at all. Hes always commenting on my behaviours especially my OCD ones and it makes me self conscious although obviously he doesn't realise this. My 8 year old nephew has Asperger's among other things and neither of my parents get him which means that they really don't get me either.

 

OCD can be pretty obvious when living with others. All of us on the spectrum have OC traits, and many have OCD (me included). OC traits are fine; they help us cope, but when they progress to OCD they cause problems. It's the source of the stress that causes OCD that must be removed. Your parents really need to learn about Asperger's rather than stick their heads in the sand (like my friend's parents, and probably so many more, they deny or trivialise the facts). A diagnosis ideally requires information about your childhood from others who knew you as a child; they needn't be your parents. It's a shame about your sister, for she'd be ideal.

 

Should I discuss things with the dr friday or not? What made you go for diagnosis or not? What have you found to be the pros and cons of this?

 

Yes, definitely. Don't be fobbed off by lazy excuses such as jokingly saying "You? Asperger's?" or "adult diagnoses are not funded in the area" (my experiences). When I said it was my legal right, everything quickly changed. I went for one, after realising that I couldn't cope with day-to-day living after my mother's death. My parents always needed to help me and protect me and knew I was 'fragile' but never knew the reason why. Reading up on my problems convinced me that I had AS so I sought a diagnosis, as was desperate for support over my executive dysfunction, stress, anxiety and panic attacks. I now have it.

 

[Livelife]

Mihaela that's some very good advice I'm glad to see your getting the help you need now.

[FlorenceD]

Thanks for your responses. I do think for me it will help massively to get a diagnosis (even if it isn't ASD)
I have no sense of identity, I notice that I'm not like other people my own age and I'm struggling more and more to fit in with society trying to act 'normal'.

I do think it's quite likely my mum is on the spectrum and her dad too (my grandad). Both are very set in their ways, neither have social lives as such and both say inappropriate things all the time. My mum also goes on and on about the same things, shes not very understanding if you've got things going on unless it's my younger sister who shes obsessed with. Every conversation goes back to her, shes at our house constantly and mum looks after her 4 year old daughter pretty much all the time. My younger sister is stressful to be around, she's very loud, verbally agressive, argues about everything and is never wrong. My older sister and I have a difficult relationship with my mum. Shes only ever interested in my younger sister and her life and problems and never us 3. I also have a brother who is nearly 40, still lives at home as do I, he can't manage his money, needs reminding to do his laundry, argues at the slightest thing, is severly dyslexic and hates too many people being around. He works nights at tesco stacking shelves and has done for 15 years. He refuses to change to days as he doesn't like change and wouldn't cope with the amount of people he would have to interact with. The problem is my mum treats him like hes an idiot most of the time. She really panders to him and babies him but also tells him off as though he's still a child. His problems are more apparent than mine but he doesn't seem to struggle as much as I do. I don't know if this is just because I try so hard to hide my behaviours whereas he doesn't. He's just who he is. Take him as he comes.

My older sister has had serious issues at home. My dad tries his best to support her and does what he can, mum however was there to begin with but now has lost interest. She moans if she has to help out with her 3 kids and any help she does give will always be used against my sister eventually in one way or another. I feel alot of pressure on me right now to try and help my sister and have become the kids 2nd parent. My nephew and I have a good relationship because we understand each other he calls us 'the weirdos'! I stay at hers every other weekend which helps me as I can get away from home. I feel accepted at my sisters and fit in there ( the only place I do). She confides in me and I find it too much sometimes as I don't know how to deal with emotions.

I have looked at the NAS website, I emailed them last year to get some advice and have emailed them again to ask about approaching the drs. I have downloaded their guide for GPs so will take this on friday to my appointment as well as my list.

I have alot going on right mow with everything and I just really need some support and advice. My deputy manager at work has been brilliant and I'm able to confide in her (though I find getting whats in my head out very difficult). Shes been very supportive with everything and has allowed me time off to go to appointments with my sister. Shes also the only other person apart from my sister that I've discussed my possible ASD with. She really 'gets' me and says she finds me funny. She says she likes me how I am and if anyones got issues with that then its their problem not mine. I think if I did get a diagnosis it wouldn't be an issue at work. It may even help my collegues understand me better. It won't affect my ability to work, if anything it may improve it once I have some answers and support from those around me.

Edited June 27, 2015 by trekster

[Mihaela]

Thanks for your responses. I do think for me it will help massively to get a diagnosis (even if it isn't ASD)

I have no sense of identity, I notice that I'm not like other people my own age and I'm struggling more and more to fit in with society trying to act 'normal'.

From all you say, I too feel that a diagnosis would help you a lot. But if not ASD then what else could it possibly be? You say you have no sense of identity. I'd like to know exactly what you mean by that. It's possible that you have a dissociative disorder as well as an ASC. The two often go together, but it's the ASC diagnosis you really need. You say you're not like others of your own age. That's such a very common trait for Aspies. I'm emotionally very young, and will always be. I feel that your struggling to act 'normal' is causing your loss of identity. It really isn't worth the effort, and anyway, being 'normal' isn't what it's cracked up to be. I struggled for many years and it caused all kinds of difficulties. Now that I have my diagnosis I feel freed from that imagined need. It's up to others to accept me for who I am, as I'm expected to with them.

 

There's much more I'd like to say about other points you make, but my brain's getting tired, so it will have to wait till tomorrow.

[Livelife]

I have alot going on right mow with everything and I just really need some support and advice. My deputy manager at work has been brilliant and I'm able to confide in her (though I find getting whats in my head out very difficult). Shes been very supportive with everything and has allowed me time off to go to appointments with my sister. Shes also the only other person apart from my sister that I've discussed my possible ASD with. She really 'gets' me and says she finds me funny. She says she likes me how I am and if anyones got issues with that then its their problem not mine. I think if I did get a diagnosis it wouldn't be an issue at work. It may even help my collegues understand me better. It won't affect my ability to work, if anything it may improve it once I have some answers and support from those around me.

There are organisations that can help you in the workplace or more importantly give you advice on how to approach situations if you do not want them involved in work but just seek advice. Have you ever considered this option.

 

Edited at FlorenceDs request

Edited June 27, 2015 by trekster

[FlorenceD]

Thanks for all the advice you have given.

 

I'm still unsure of how to talk to the dr on friday about my difficulties.

I found out today that my younger sister (the one mums obsessed with) saw her dr the other day and because she cried and her notes state suicidal thoughts and self harm from when she was a teenager (shes 24), she was given anti depressants, offered counselling and advice and given info for the wellbeing centre.

 

I on the other hand have a history of suicidal thoughts, self harm, anxiety, stress, depression and OCD and told the dr I thought I could have ASD and got told to self refer to CBT ( still haven't heard from them) and told to go the local Wellbeing centre (which I can't as it's all during my working hours). Basically I feel as if I don't matter. I'm not one for crying (I struggle to express my emotions) but my sister cries over little things and because she cries to the dr, they take her seriously. My behaviours have been with me since childhood but the drs don't seem to care.

 

Do you think I should talk to the dr friday or wait for CBT and discuss it with them? Who's more likely to take me seriously and listen? How did you go about starting the conversation with the dr when you suspected you had ASD? I'm just really getting anxious now about friday's appointment.

[Mihaela]

I on the other hand have a history of suicidal thoughts, self harm, anxiety, stress, depression and OCD and told the dr I thought I could have ASD and got told to self refer to CBT ( still haven't heard from them) and told to go the local Wellbeing centre (which I can't as it's all during my working hours). Basically I feel as if I don't matter. I'm not one for crying (I struggle to express my emotions) but my sister cries over little things and because she cries to the dr, they take her seriously. My behaviours have been with me since childhood but the drs don't seem to care.

 

Do you think I should talk to the dr friday or wait for CBT and discuss it with them? Who's more likely to take me seriously and listen? How did you go about starting the conversation with the dr when you suspected you had ASD? I'm just really getting anxious now about friday's appointment.

I suspect that this appearing not to care is because so many doctors are either not clued up on AS or (more worryingly) are trying to divert us to 'generic' therapies to save money - a short-term fix.

 

I simply went to my doctor and said that I suspected I had AS and wanted to be referred to a specialist. I gave a few reasons why - such as social difficulties, anxiety, executive dysfunction, sensory issues, etc. Nothing in any detail.

 

I wouldn't wait for the CBT - but there's no harm in discussing it with them at the time. I'd ask your doctor on Friday to arrange a referral for an AS assessment. It's your right, and it's their duty to provide it. Don't let them fob you off. Good luck!

[Livelife]

I suspect that this appearing not to care is because so many doctors are either not clued up on AS or (more worryingly) are trying to divert us to 'generic' therapies to save money - a short-term fix.

I simply went to my doctor and said that I suspected I had AS and wanted to be referred to a specialist. I gave a few reasons why - such as social difficulties, anxiety, executive dysfunction, sensory issues, etc. Nothing in any detail.

I wouldn't wait for the CBT - but there's no harm in discussing it with them at the time. I'd ask your doctor on Friday to arrange a referral for an AS assessment. It's your right, and it's their duty to provide it. Don't let them fob you off. Good luck!

I've heard some doctors say there is no funding for autistic referrals for adults so it won't happen just like other procedures that arnt carried out because of cost.

I was lucky and mine was funded but I have heard of people who have been refused, good luck FlorenceD with the appointment hope you find support and the willingness to help you from your surgery.

[FlorenceD]

A quick update.

So I went and spoke to the doctor on Friday. I was so anxious by the time I got in to see her (she was 40 mins late and I had to get back to work) that I found it difficult to say all I needed to. Luckily I had my list to give her which she has scanned onto my notes. She said that for now the best thing to do is to wait for the CBT which she's going to chase up and get their pyschologists input first. If it is personality disorder then they would refer me to Mental Health but if it's ASD then she's happy to push for diagnosis but wants the CBT therapists input as she said it would be helpful with going forward for diagnosis and it's more likely that I will get assessed if we have their input first.

 

Hopefully I will now hear from the CBT service soon and then start to finally move forward with everything. I spoke to my younger sister (the one I don't always get on with) and just kind of mentioned it all and she said she reckons I could have ASD. She said it would explain a lot! She also said that if I got a diagnosis, it would help our parents to understand why I do certain things and maybe they wouldn't nag me so much or get annoyed at me all the time. I hadn't even thought of that. She also said that it would be good to learn some strategies that would help and support me.

 

Feeling a little better now that the doctor has acknowledged that yes I may well be on the spectrum and not just fobbed me off again.

 

Thanks once again

[Confused Traveller]

I've been prescribed CBT twice. I started to work out for myself I may have Aspergers a couple of days before my last session, and spoke to the counsellor about it. He said he didn't know anything about Aspergers, but didn't take it further. It was a mental health nurse who suggested I have it, and started the ball rolling that led to me being stuck in this 10 month wait for a diagnosis. So I'm not sure that being sent down any particular route makes much difference. It's who you happen to see, and what, if anything, they know, that makes the difference.

[Mihaela]

At least that hurdle is over and she's not fobbed you off, but you're still none the wiser. You were within your rights to request a referral to a specialist. Only an autism specialist is competent to diagnose you, yet if you were a child it seems almost anyone can - which isn't good.;[[[[[[

If it is personality disorder then they would refer me to Mental Health but if it's ASD then she's happy to push for diagnosis but wants the CBT therapists input as she said it would be helpful with going forward for diagnosis and it's more likely that I will get assessed if we have their input first.

I spoke to my younger sister (the one I don't always get on with) and just kind of mentioned it all and she said she reckons I could have ASD. She said it would explain a lot! She also said that if I got a diagnosis, it would help our parents to understand why I do certain things and maybe they wouldn't nag me so much or get annoyed at me all the time. I hadn't even thought of that. She also said that it would be good to learn some strategies that would help and support me.

No way do you have a PD, but all the signs you mention say that you have a PDD! But please bear in mind that CBT therapists are not generally very knowledgeable about autism. Don't let them simply assume that you suffer from anxiety or depression. In the end it will most likely have to go bad to your doctor for a referral.

It must be so reassuring that that particular sister is beginning to see the light. A friend of mine sought a diagnosis for exactly the same reason that your sister gives: that her parents wouldn't nag her so much or get annoyed with her. It was making her life very unhappy, for she really can't help being the way she is. Being understood by others is one the main reasons for getting a diagnosis. Let us know how you get on.

[Livelife]

There appears to be a lot of positives that have come from your visit to the doctor and talking to your sister with her input is step forward that can only help all of you.

With the wait for your first assessment then the many months of waiting for your autistic diagnosis if they deem it appropriate it will be some time before you have your official diagnosis.

It can seem like a long time but try not to let the frustration get to you if you can the waiting is the worst thing in these cases.

I try not to be to pessimistic as you have had the offer of help which is very good. I just think with the frustration that this condition can bring waiting so long is putting lives on hold living in limbo for far to long.

[Mihaela]

Oops! I meant: "...back to your doctor..."
Confused, I agree - every hinges on who happen to see, and how experienced they are.

Livelife - waiting times seem to be another big variable. I didn't have to wait all that long for a diagnosis. I think the whole autism thing has become something of a postcode lottery. So unfair.

[Livelife]

I think you make a good point there Mihaela it is very much a post code lottery dependant on where you happen to be living. It can be different for many people, I've read of cases where people have urgently needed medical care but it was unavailable from their local health services and they have moved homes just to get the care somebody else was getting only a few miles away.

It just goes to prove the stupidity of the system they claims works for people it's about time they realised people and care comes first not regulation for regulations sake.