Lost after diagnosis

I would definitely look into it.  I don't know specifically about the student loan situation, but I always understood being 'behind' with a loan as meaning a payment was due but was not made (i.e. you would be being chased for it), as opposed to no payment was due (for whatever reason).

Thank you Zitami. I wish I'd known I could have applied for DSA before - I already had a disability profile for depression and anxiety, as well as for chronic pain, audio processing disorder and tinnitus. That said, the eligibility criteria say that if you are behind with student loan repayments you're not entitled. I have an outstanding student loan from 1999-2000 when I tried to do a degree but it didn't go well so I dropped out. I've never held down a job for long, so I e only made about two or three repayments (just before I went on maternity leave so my salary dropped below the threshold again). I don't know if that means I'm "behind". I'm going to look into it properly next week. I'm in Ireland just now visiting my sister and my brand new niece. We've been talking a lot about our childhoods and what my diagnosis means. 

I got my DSA initially for 'mental health reasons' which was comorbid anxiety and depression and issues related to my then undiagnosed ASD.  You would be entitled to one for ASD though.  I would definitely recommend it as the extra support really helps (although I do understand why you might not want to apply, I didn't until I reached a crisis point in my second year).  The assessment process was very gentle and supportive, not at all like the horror stories you hear about benefits, so don't be put off by that.

I totally get what you are saying.  I too have "coped" for a long time, including working as a Stage Manager on national tours.  I was the person that people relied on to keep it together and keep everything on track.  Couldn't really be more ironic.  I think I coped because I was so adept at masking and keeping notes to function.  I have not found it natural to have to open up and explore my vulnerabilities and it felt very strange to be seen as "disabled" and to explore my impairments.  However, when I ran into problems at uni having the clout of a mentor helped with negotiating deadlines.  

i have had a run in of terrible experiences recently where I have trusted people who did not have my best interests at heart and it has made me realise that the only thing positive I can get from that is that maybe my coping strategies havent always helped me as much as I thought.  I am now trying to be more open minded about how I manage and to embrace whatever (limited) help is on offer.  My mentor was great at rationalising my study methods and I became much more efficient.  

Thank you jojo. I had looked into my eligibility for DSA before, the OU have a quick online quiz thing, and as long as I didn't mention my outstanding student loan from 1999, it said I may be eligible. I called up the application form but I couldn't bring myself to complete it. I felt like a fraud! I've "coped" for so long (in life as well as in study) that I think it's going to be really hard to relax this facade of managing... I love the idea of having a mentor to give me a bit of support, I do find it really hard keeping on top of everything, but I shudder at the idea of having to "describe my difficulties" on a form in the hope of being thought "disabled enough" to qualify for support! 

I've got a lot to get my head around... 

Hi VikkiS,

i know your comment is for Ziatmi but I wanted to let you know that I got DSA last year as an MA distance learning student (not OU) for Aspergers.  I had a mentor for 1 hour a week, computer, software - dragon, inspiration etc, digital recorder.  It really helped me even though I'd had reservations that it would help due to being a mature student.  

I was suprised at how much more efficient I got with mentoring despite having had a career that required me to be the organised one lol. 

Hi Zitami

I hope you don't mind me asking, do you get DSA for something else or for ASD? 

I'm surprised, and relieved, to discover how many people are in a similar situation to me. I know what you mean about the anticlimax. My assessment was very quick, but also quite unexpected - at my first two appointments they said they really didn't think I was on the spectrum, but suggested speaking to my mum (if I was willing) about what I was like as a baby and child, which is what led to the absolute diagnosis. That made it a bit of a shock, because from what they'd said before I was expecting them to confirm that it wasn't the reason for my life-long difficulties and that I'd be back to square one trying to find ways to cope, and reasons for why I couldn't. So on the one hand the diagnosis was a huge relief, but since then I've been in utter turmoil, and things haven't changed yet. Life is still just as difficult. 

Here's hoping the way becomes clearer for us all!

Hi Vicki, 

I am also an OU student, also on transitional fees, also recently diagnosed (and really struggling to get my head around it all), also behind with my current module and struggling to focus with a deadline looming, also female and a similar age (37).  I would love to be able to defer right now but don't think I can because of the financial implications and I think I might lose my DSA support in the final year if I did so also.  I am due to finish in 2017.

I have two modules this year because I deferred one with assignment banking from last year because I needed to deal with some issues my daughter was having and just couldn't properly focus on both things at once (I have huge difficulties with multitasking which I think is due to my ASD).

In some ways getting diagnosed seems like a bit of an anticlimax.  It is hugely important to us but doesn't really seem to change very much in practical terms.  The same problems are still there and I'm not much clearer on how to deal with them.

Just thought I'd say hi because we seem to have very similar circumstances.

I have until March to decide if I want to defer, so it's not a decision I need to take right now. I have a time limit on completing this degree too, because of changes that happened in 2012. I have until December 2017, so if I defer then I'm coming very close to the deadline if anything else goes wrong. I've already extended a year because of having cancer. 

OU does have good disability support, I already have a number of supports in place because of other conditions, so this is just another thing to add to the list. They did email me though to ask me to describe specifically how AS affects me. I had to reply saying that at this point I have no idea! I don't know what I can "blame" on AS and what is down to personality, experience, environment etc. I'm hoping I'll know more over time. 

The thing about OU is that you do build up the credits and can more easily take time out. And you do have good grounds for mitigating circumstances.

If you were on a full time attending degree at a university the time pressure would be high, because deferring final year can be quite punitive, depending on what mitigating circumstances decisions are made.

OU ought to be good on disability support, but then they don't have the level of physical presence of students with special needs, and their disability resources are spread across sites. You need to find out if the central disability support is able to respond (this arrangement seems to shift).

I think deferral options are vital with autism. If you are studying full time you are at a significant disadvantage and expected to try to keep up the pace with able students. It is not something that can realistically be achieved at the normal rate of three to four years from A levels.

I feel parents should be prepared to consider lengthening the timescale - there should be no shame in this.

Although OU gives you more flexibility I think you have to permit yourself some "give".

I think this discussion is exactly what I needed to read right now. I'm SO relieved to discover it's not just me struggling with my diagnosis (two weeks ago, I'm 39 with a husband who is almost certaintly also Aspie, and two daughters, one of whom has a high-functioning autism diagnosis from a year ago, and one who has just been referred for assessment following my diagnosis). I feel like there's a tornado raging in my head. I'm in my final year of a six-year part-time degree with the Open University and I've lost all capacity for critical thought, hopefully temporarily. I'm overdue on my first essay though, and really struggling to make space in my brain to deal with it. I'm feeling pretty existential at the moment, and scenarios from throughout my life keep replaying in my mind as I wonder whether Asperger's was responsible for it going wrong. 

I've registered with my local autism initiative project, and was meant to be going to their Tuesday morning drop-in for women over 35 this morning, but I need to spend the day trying to get this essay done. They also do an eight-week course for people diagnosed as adults, which I will do in the new year. I'm really hoping it will help me come to terms with all the different feelings I'm having about this (and letting go of the what-ifs and the if-onlys). 

I like the idea of the super power with strings. I just need to work through what this means for me, because right now all I can see is the strings, and even thinking about all my achievements "despite undiagnosed Asperger's" is still labelling it a DISability. 

Student support have suggested I consider deferring this year of study so I can sort my head out and start again next October, but I don't want to wait that long to finish, I'm fed up studying now, plus I'll be 40 next year and graduating is on my list of Forty Things I'm planning to do to celebrate (this was a decision I'd taken long before assessment and diagnosis, when I came to realise that there was no point planning the big party I'd assumed I'd have for my 40th, because I don't actually have any friends...)

One thing I don't feel though is guilty. Difficulties I have had are because of the Asperger's, not because of me. I have done my best, I have never intentionally hurt or upset anyone, so I don't have anything to feel guilty about. It wasn't my fault, I have mitigating circumstances. I'm hoping that now I know the cause of the difficulty, I will be able to adjust better for it in future. 

I like the "gift with strings" idea. There was a discussion a while ago where I likened having ASD to having an unruly dog. http://community.autism.org.uk/discussions/just-chat/does-anyone-want-chat#comment-25893 Azalea then suggested that the infamous Fenton on youtube offered another model for how to think of our "gift"

The comments have helped me to understand things from the other perspective.  I have been struggling to find any positives from the situation but I realise that empowerment and self knowledge are the way forward.  

ironically, it has taken a really bad experience to have this revelation.  I really couldn't understand why my car crash of a life wasn't all my fault.  I do feel  now that I am able to give myself a tiny bit of a break for all of this.  I can also start to reframe the things I have achieved: that I managed these things in spite of everything.  

Wow.  These comments have really moved me.  I have read quite a lot of books on the subject but seeing these comments and realizing that other people have experienced similar life experiences and come out the other side has made a big difference.

i think my experiences have been considerably hindered by an autism "specialist" psychologist who I went to see privately to try and come to terms with my diagnosis.  I had what I now know was incorrect therapy and it has harmed me considerably.  I have been left by that person to believe that I have a problem with ALL my relationships (married for 10 years, best friend for 20 years).  I am now in the process of reporting them to their professional bodies.

that aside,  it has helped me to realise where my weaknesses are.  I thought I could read people and communicated well but evidently not.  In the last year I have had 3 medical "professionals" take care of my vulnerability by fobbing me off with poor treatment.  (complaints upheld).  It has taken all this to identify where my deficits are As I am very sensitive and thought I was entirely to blame.  I can see now that it's not all my fault.  I was frightened of accepting my diagnosis but I am starting to realise that knowing other people have similar issues is in itself very healing.  My best friends partner confided in me   That he suspects he too has Aspergers but saw it as cathartic.  We talked about the shame I feel and I am beginning to realise that it isnt my fault.  I think that learning about my lack of insight is helping me to realise that that really isn't my fault and I am beginning to forgive myself. 

I suspect that people like nm and gojojo who are going through the trauma of change that a diagnosis brings might struggle to understand how autism can be a gift. Everyone, autistic or otherwise, has strengths and weaknesses. Autistic people often have strengths in being able to solve deep problems or being more numerate. We are often brutally honest but also kind. We also have weaknesses that can make our lives harder if we don't understand what is going on.

There are ways to accept and tackle the condition and Coogy recommends some very good books that help people get to a more positive frame of mind about the condition. Somehow, you have to believe that the future is really brighter than it seems right now, it takes some trust and you have to "cut yourself a break" as nm puts it in the original post above.

Great post Coogybear.

When social interactions don't go as we'd like we think we are at fault -always. But social interaction is a two-way thing, the NT person got it wrong as well. We put all the burden of adjusting and adapting onto ourselves and this often translates into self-blame.

Hello gojojo & nm,

   Firstly, let me say I do understand. As a fellow female on the spectrum it's been incredibly hard for me also.

However, you are not alone and their are people who do understand.

I'm aware that some people on the spectrum; and I include myself here, are incredably hard on themselves. My own focus tends to centre on all the things I know I struggle with and all the areas I get wrong. The truth is, you cannot change that, it is part of who you are. However, few of us realize how much we do accomplish and what our strengths are, possibly even believing that all the negitives somehow cancel out our skills and atributes. In my case, I'm truly bad at recognising anything good that I do. Our Black and white thinking often doesn't help either.

Taking time to sit and talk with others on the spectrum or getting reflections from others who appreciate us as a whole person, is incredably helpful. No one should be made to feel foolish, and If a friend leaves you feeling that way, then I suspect they are not a true friend.

Part of coming to terms with things, post diagnosis, is not just about focusing on the negetives, but using them as a tool to help you with the positives in your life. Far from being a negitive, it seems to me you are both very in touch with where you struggle. This may sound odd, but you need to use this as a foundation, to build on the positives in your life.

I'm really crap at managing money, understanding finances and generally planning and organising. I also have Dyslexia. Post diagnosis, and for the first time ever, I've managed to ask for help with those elements I struggle with, which with time, I hope will make life more bareable instead of just struggling on by myself and feeling I'm constantly failing.

It's ok for us to admit we struggle. Neurotypical people struggle with things too!

Empowerment comes with surrounding yourself with enablers. I'm really OCD and use those skills in my work, which is a positive. The elements I struggle with, now i've become more aware of them, have to be support by other people. Together it works.

Can I suggest a book that may help. 'Living well on the spectrum,' by Valerie Gaus. It's essentaillly a work book, but it pretty much helps you work through identifying areas of need and establishing strategies to help. It also explains the reasons behind some of the sensory and cognitive issues Aspies have.

www.amazon.co.uk/.../1606236342

Also, read some of the female Aspie literature out there. Sarah Hendrix and Cynthia Kim are two examples of late diagnosed, female, Adults who have learned to identify areas they struggle with and turn their life around.

www.amazon.co.uk/.../ref=sr_1_1

www.amazon.co.uk/.../ref=sr_1_4

Being and Aspie isn't a curse, It's actually a gift. The world needs more Aspie tallent truth be known. We are each of us gifted. 'Different, Not less,' I believe Temples mum explained it. Cut yourself some slack and be a little kinder to yourelf.

Talk to people who understand, surround yourselves with those who empower and listen only to those who love you for who you are. If NT's treat you badly, then they don't deserve to have you as aa friend. You are more than just a label or a diagnosis, you are unique and have much to offer the world. 

Talk to other women on the spectrum and post here when you need a little support. You are not alone.

Take care and Good luck

Coogy Mxx

Dear gojojo,

gojojo said:

my life has completely fallen apart since diagnosis.  The shame and guilt I feel that all the interactions I've had with people have all been my fault, that i don't and never will fit in, that when people don't understand me it is my fault not theirs.  I have had months of therapy with an autism "specialist" and am no nearer to self acceptance

....

i realise that for me the biggest hurdle is learning that I will always be different and marginalized at least before this I was hoping that one day the depression would lift and I would be "normal".  I am now trying and struggling to accept that I will always be different, unintentionally cause offence and will have to learn to adjust to being lonely and depressed as this will never change.

I'll start by admitting that I am a man but I think you will find that there are female posters on the forum who have had positive experience after diagnosis.

I think that the first year after diagnosis can be very tough. I had an inital period of euphoria as I thought I understood things better. I then came down to earth with a crash as my employers didn't take diagnosis as sufficient explanation for what had happened in that job. 18 months later and I am now starting to have moments of pure fun which is quite a change as I was in a very bad mental state 18 months ago.

Some things will not change (we will always have issues with some things - it is a permanent condition) but some things are not permanent. For example, depression is not a permanent and inevitable consequence of autism. It is common but it can lift (speaking from my own experience) as you learn to live with the condition.

It is miserable and awful to read about your feelings of shame and guilt. Can you bear to give yourself a break and not be so hard on yourself? We can be very judgemental and we can see things in very black and white terms but why condemn yourself for something that you did not do deliberately? I think we should be conscious of the impact that we can have but is anyone blaming you for being the way you are?

Hello NM,

I don't have any answers but understand what you are going through.  I'm a 42 year old woman and was diagnosed last year by my psychiatrist after years of anxiety, agoraphobia and bipolar depression.  I hadn't been seeking a diagnosis, nor knew anything about aspergers.

my life has completely fallen apart since diagnosis.  The shame and guilt I feel that all the interactions I've had with people have all been my fault, that i don't and never will fit in, that when people don't understand me it is my fault not theirs.  I have had months of therapy with an autism "specialist" and am no nearer to self acceptance.

i was withdrawing from society before diagnosis and quit my job etc I have a husband and one friend left;  my family and few "friends" didn't want to know me anymore when I told them about the diagnosis.  Having this knowledge has made me hate myself even more and I realise that there is no hope for me.  I must soldier on alone with no one understanding me and being treated like I'm an idioT.

i realise that for me the biggest hurdle is learning that I will always be different and marginalized at least before this I was hoping that one day the depression would lift and I would be "normal".  I am now trying and struggling to accept that I will always be different, unintentionally cause offence and will have to learn to adjust to being lonely and depressed as this will never change.  I hope to get back to work one day but that will mean being self employed to avoid contact with people and upsetting them.  I never thought that my life would amount to this.  I don't understand the people who have found relief from diagnosis.  I suspect they are men.  I live in London and have tried to meet aspie women but everything seems geared to men.  oh, I have a cat who keeps me going.

sorry this isn't very cheerful, I just want to tell you that you are not alone.  

Hello

I only got diagnosed myself a little older at 45 and now 47.  My elation did happen at the mere suggestion and referal, there really is more happening. Previously i had put in for CBT and that was working whilst actually have the CBT. But that came to an end and i can't put into place what I was doing. I was very good at being able to take the issues that were upsetting me and luckily I had an excellent psychologist who didn't judge for the seemingly small issues. I had a year gap then decided to re-refer as was well.... that time I was initially passed from pillar to post as some  may experience but this time it was with real justification. I wasn't to know that the Psychologist who referred me was actaully specialising in Autism and the ASD Spectrum. She told me when she referred me. I was on cloud 9 for a few weeks at the mere suggestion.

Then the worry came when waiting for the results of the assessments. As - what happens if they say not. I hadn't done any reading before hand because decided it better to not know too much. Be natural. But I read plenty later and certainly seemed to fit the female side of Autism. But who knows what they were seeing. Luckily for me the diagnosis did turn out that 2/3'rds Autistic and PDD-NOS. I relaxed as was on the ASD Spectrum and would begin to get the help I needed. I was told I have difficulty in sequence of things and processing information. The nurse made a point almost of telling me if she was me, if there was anything I needed to remember like dates etc, get people to write them down.  Kind of all meant nothing to me at time.

Two years on I am beginning to glimpse where I find difficulties and know my emotions and recognise them a little bit more. I have had nearly a year and a bit of support from the Occupational Nurse too. I can't really say what we did as didn't seem to help much but on the other hand I am recognising my difficulties a little bit more.

They gave me an autism card of which I put down a contact. I had put one down but things changed naturally at that time and had to find another person whom to put down.  I also was emailing someone I trusted and they gave me lots of tips. It didn't seem so much a suprise to him when first told him they think am Asperger's. But then he hadn't known me very long and was able to have the outside view of me. He was able to offer support in the way I needed. He moved so had to find someone else and I am so grateful as been able to sort of fill in the bits a little.

The logo that is used of a Jigsaw piece. I very much relate to that. I don't think that will ever change but what is changing I know myself better.  I know when something is not quite happening for me I can 'talk' it through with the trusted friend and he often will find that missing piece for me in the way I can relate to.

Now I do know what they mean by processing information. I find it hard to process a lot of information in one go. The example I can easily describe, is that I love singing. Am not a good singer-just love singing and am in two choirs. When we are learning a piece I can find that hard. It the constant changes and keeping up with it. Something gets altered because it don't sound right and rearrange it. I find that especially hard somehow and have been misunderstood in the past in a previous choir. I don't mark my copy because it gets confusing. Now people around me, the right people know I have autism and try to take it into account. If I find tears are too near I can go and sit out and recover. It not being seen as not interested or anything. I am just finding my own space.

I am learning too that sometimes endings of things can be hard and just asked a friend for help on this. It don't work for me to have an object to carry through with me to have that continuim. The event has still ended. Often I can go away and it all okay but other times I really find it difficult to balance out as I call it.

We all have our unique things we find hard on the ASD Spectrum. If you only just been diagnosed then it at the beginning of learning and it may mean unlearning some of the habital things. We can't control other people but we can control ourselves and if people around us aren't on the whole supportive then find yourselve people who are. I have been lucky in the sense and stumbled across people who shown themselves to be supportive when I needed that. Things have changed for me too, but for the better. Am in more control now rather than things just happen. I have actually seen through to an end of one project because I learned to ask.

It will take time to feel better in yourself with Autism. There a lot to learn about you. We will still have the difficulties we have but it is learning how to cope around them I guess. Hope this helps a little.