Why does none of this make sense?

Am now seeing a cat playing the guitar which is making me smile too. Maybe its Julie Felix or Cat Stevens.

I think most of the issues you describe are down to being on the spectrum. My personal take on it is that there is no fix and no simple way to make things easier.

I spend much time reviewing social interactions and wondering if i got it right and if I understood what the person meant me to understand. Not so much at work but in personal relationships. Of late I have begun to wonder why I'm seeing the other person as the arbiter of the relationship, why isn't my understanding of what went on just as valid as theirs? If our take on it differs why is mine always the wrong one and me the one who must struggle to adjust?

Dear Electra

It is of use actually.  Partly because if at least one other person has been there it helps me remind myself that the whole world is not deliberatly out to get me.  Partly because it's refreshing to hear someone admit that they don't know, that there might not be an answer, rather than simply avoid the issue.

And partly because I managed to misread it as "You can't bark & they can't play the guitar" - which firstly gave me one of those "WTF?" moments, & then made me smile, which I needed, as I'm having a very bad day.

So for that, if for nothing else, thank you.

Lady N

It does  make a lot of sense, at least to someone who has been in much the same place.

Remember that the diagnosis is based on the things you appear to a neurotypical person to do less well than neurotypical people. It does not include the things you can do better than them or the things you can do and they can't do at all. You are a cat that has just been assessed by dogs as to how doglike you are.You can't bark and they can't land on their feet.

As for getting help on how to be better with people I just don't know. I have had to accept that however well i look like I'm doing in a social situation, it is done by means of copying and doing what I see works for others. It can never be the second-nature fun thing it is for an NT person. But find another person on the spectrum and we understand each other just fine with no problems and no awkwardness and no sense that either of us is missing half the interaction because we miss the cues and signs.

I hope some of this rambling is of use!

Hi Electra

What I was hoping for was some idea of what I'm experiencing may be due to ASD, and what I might be able to do to improve things.  I've spent my life being told I'm oversensitive/take things to seriously, and I know that I'm bad in social situations & clumsy.  Looking at the leaflet I've been given from the NAS, it would now appear that all these things could be due to ASD, and there might be help available - if I could identify exactly what my problems are.  But just looking at the lists of "possible" issues without any guidance seems to make my brain shut down.

I seem to have gone from being "unofficially crap with people" to being "officially crap with people" & while the team who diagnosed me seem to think they've done something really great, I'm more confused than ever.

This isn't making much sense either, sorry.

Lady N

Hi Lady Nicotine

I confess to feeling the same way about the lack of support. Being diagnosed sets up an expectation of getting help, a progression. 'Oh good' you think 'this is a way forward'. Though autism isn't an illness you would not be told you were diabetic and left to get on with it, so our expectation of help is a reasonable one.

I feel the truth is that they offer no help because they have none to give. So-called professionals understand autism poorly. They cannot understand how it is to think differently, see the world differently and want to communicate differently. By our age we have have had decades of making coping strategies, copying others and learning what to say and when. I've yet to meet an autism professional who has the skill to guide older autistic women towards a happier future.

Can I ask what sort of help you were hoping for? If you could have a professional do something to help you or make you feel better what would it be?

The amount of help you can get depend on your local authority, some are doing things others are doing nothing at all despite the law. It's just a lottery.

Hi Electra

What you are saying does strike a chord with me, and I would appreciate any insights you would be prepared to share.

It's not "not being like everyone else" that bothers me - I've always been what other people consider "a bit odd" & I'm quite happy with that.  What bothers me is that having confirmed what I already suspected (that I had ASD) & what I already knew (many other people have similar problems) I feel that I'm now flailing around looking for help while the professionals sit back smugly feeling they've done another good job.

But of course I am slightly biased having had numbers of bad experiences with professionals.

If I could pick up on this aspect of the discussion, there's not much out there on how to self help. Failing adequate support services what is needed urgently is a user's manual for living with autism.

The trouble is this is a condition where we are all very different and individual - not just degree of severity, but degree of presence of different aspects, with various comorbidities and issues of low self esteem and depression on top. Hence one person's interpretation of a guide is much unlike another's.

I've mentioned before Marc Segar's "Coping: a survival guide for people with asperger's syndrome", that was published on the web 17 years ago through York University. www-users.cs.york.ac/.../survival  Someone immediately responded that he/she didn't recognise themselves.

Another is Marc Fleisher "Survival Strategies for people on the Autism Spectrum" Jessica Kingsley Publishers 2006. Some things in this I cringed at - oh no, not me - it's a very individual perception of coping, but if you are patient with it it is full of good advice. I had forgotten in particular that it includes a "Further Education and Training Guide" Chapter 7, pertinent to other current threads, which is written from a person with autism perspective.

This individuality has generally discouraged others from publishing guides based on just themselves, so the other way out is collective. However the attempt to balance different perspectives can end up saying nothing much at all.

Jessica Kingsley Publishers also produced something out of the Sheffield Hallam stable in 2008 "A Self-determined future with Asperger Syndrome - Solution Focussed Approaches" by E Veronica Bliss and Genevieve Edmonds. This was a cooperative venture by someone with aspergers and a professional with twenty years experience. It is based a lot on dialogue - people discussing their issues - a sort of edited highlights of coping.

Sheffield Hallam went on to publish a series on adults speaking out about asperger syndrome, published by Jessica Kingsley, eg Asperger Syndrome & Employment, Asperger Syndrome and Social relationships. These continued the personal experience and insight dialogues, but I'm not sure who they are for - informing professionals or helping people on the spectrum. And who wants a whole series or roundabout dialogues, when what is urgently needed is a handy guide.

In contrast what is so sad is the copious amount of well-intentioned but dry and uninspiring publications on managing with autism written by professionals from outside. They always have pages of tables on how to plan every aspect of life, written with often little grasp of the real issues, from a perspective that people on the spectrum are just idiots who need to be shown how to do everything. That so misses the point. I'd give an example, but eventually I had a clear out and gave most of them away.

I think it would be possible to create something that presented and compared approaches rather than detailed blue-prints for daily living. What is needed are tried and tested approaches and strategies, rather than trying to address each and every scenario.

For example I made much use of pocket notebooks from my teens onwards. I wrote down when people said something about what I'd done wrong, that I could follow up on later, or observations on how other people behaved. I became an anthropologist studying and recording facets of human life, and tried to use it to act out a more effective daily interchange. The artificiality was clumsy and obvious, but back went the review and evaluation into the notebook for next time.

Hello

No it's not possible to send personal messages on our community. The idea is that comments are open but that individuals can't be easily identified so we check content to ensure  no one has revealed their full name, where they live etc.

You can email or call our helpline in confidence but there will be a wait for a personal response. 

https://www.autism.org.uk/enquiry 

Thanks

Kasey

I don't think personal messages are possible. Moderator? Some advice please.

If what I write strikes a chord with you I am ok to continue on here.

I was interested to read that you did not really derive any personal benefit from getting the diagnosis. I began the diagnostic process a little over a year ago. I didn't feel relief because there were others in the same boat (seems daft to me too) but because I could forgive myself for not being like everyone else no matter how hard I tried to be. I had carried a huge burden without realising it

But apart from that they give you a label that says you think differently from everyone, see the world differently, will be seen diffeently, you assign importance to different things, you want different things - but you get no help in finding what all that means and how you can make life better for yourself.

Hi Electra

You don't sound crazy at all - you sound like you might have some idea of what you're talking about.  I would like you to explain a bit more if you could.  I'm really new to this group, so don't really know the protocols - if you don't want to post it publically, is there a way to send a "personal" message?

Lady Nicotine

Hello Lady Nicotine. I can identify with you thinking you don't know your own feelings and also with your frustrating interactions with neurotypical professionals who tell us to do things we can't do and then tell us we are not trying or not wanting to help ourselves.

I won't presume you are like me but if perhaps you are then your mind and body are already more connected than most therapists could understand. This is sounding loopy even to me, but I'm describing how I feel in case it is something like how you feel. I don't have that separation of mind and body that would permit my mind to look at my body or my feelings from a distance. They interact constantly, I just needed to learn how to listen. I don't see this as a failing at all, I work with how I am.

I will stop here in case you are thinking, who is this crazy woman, but I am happy to explain further if it would help.

A good diet can certainly help. I recommend a bowl of porridge oats and banana in the morning - foods that boost serotonin levels. Of course, diet on its own cannot resolve depression or anxiety - I just have the latter, and it is bad regardless of a fairly good diet, but a bad diet consisting of junk foods will make any mental health issues ten times worse.

I also find classical music relaxing and calming.

Hi LadyNicotine,

   I completely hear where you are coming from, even down to the reserves. I had a complete burnout myself a few years back and it took me considerable time to recover. The darkest time in many years.

For me, being a female has made it all the more difficult. My experiences of betrayal and my own incredible naivety has insured a very difficult life to date, but slowly I'm begining to take greater control of the elements that have made my life hard.

Few therapists seem able to diagnose or support women on the spectrum very well in my opinion. As you say it gets harder as you get older. I have a theory that this is related to adrenal exhaustion from constantly being in fight or flight mode. Apparently, their is little medical research to support this theory in Britain, but I've heard others with ASD speak of it. My own therapist also concurs with this theory, but adds that, as women approach menopause this also seems to amplify things. Perhaps this is why we suffer greatly, but it's not much consolation for those going through it though. Found this on the net. It may help. Some of the symptoms certainly rang bells for me.

www.autismfile.com/.../autism-and-adrenal-stress

Currently, I'm trying to research for my boys, but really much of what I've found i'd also like to apply to myself as it seems quite relevent. This is why I was suggesting a multi-pronged approach earlier.

Chemical imbalances have a profound affect on the body and those on the spectrum are particularly prone it seems. 

Can I suggest you have a look at this avenue. I dismissed it at first, but since seeing the affects first hand with my sons, i'm begining to realize their is most definately an arguement for diet control, therapies such as massage and osteopathy and even alternative therapies to reduce the stress levels felt by those with ASD.

Since getting my son massage and osteopathy treatment, it's turned down the volume greatly for him on the depression front.

As the moderator mentioned, do contact their helpline if things become too overwhelming and of course this forum is always great when you need to chat with people who truly understand. Hope this is of some help.

Kindest regards

Coogybear xx

Hi Coogy

I've no idea if the therapists I've been sent to were ASD specialsists, as that was pre my ASD diagnosis, when I was "just" being treated for depression.  I know my current shrink isn't - but strangely enough I've never found the "just stop thinking it" approach very helpful for depression either .  I suspect the shrink's next approach is going to be to try & pack me off to yet another therapist, hopefully this time specialising in ASD, but I have so few reserves left that it feels too dangerous to trust anyone now, as another bad experience might be the one that makes me fall apart completely.

So then the professionals say "well you're not helping yourself you know", which is even worse to hear for being true.

LadyNicotine

Hi ladynicotine,

I'm sorry to hear about the issues you've been facing and for such a long time too. Hopefully you will find some helpful support on this community.

As True Colors says, we do have an Autism Helpline which you may like to contact. Their number is 0808 800 4104. It's free to call from landlines and most mobiles and they're open 10am to 4pm.

Take care,

Adél, NAS mod

Hello again,

I do appreciate completely what you say and the waking in an anxious state rings many familiar bells for me. The Black Dog as I refer to it, can creep up without warning and can be unforgiving to say the least. I've never found medication of any help personally, in fact one nearly pushed me completely over the edge, so I've often had to face my dog with the very rawest feelings deep depression can bring.

For me, a multi-pronged approach has been the best way forward. (Mind, Body and Soul if you will.)

Can I ask, is your therapist a specialist in ASD? Some of the things you have mentioned, lead me to believe they don't have a full appreciation of what it is to be on the spectrum. Telling anyone to just 'pull themselves together or just stop thinking it' is not helpful. 

Coogy.

Hi Coogybear

Some of what you say makes sense, so I'll grab that as somewhere to start from.

I think I'm unable to identify my feelings - one of the therapists told me that I need to "get in touch with my feelings, & connect my mind & my body", but without giving any ideas how I might go about that.  Is it possible that I might not be able to identify what I'm feeling, & if so is there any way of learing?  If I can't identify my feelings it might be why I didn't get anywhere with Mindfulness when I tried - all I could come up with was how I felt physically.

The depression is never going to go away completely, but I think that fact that it's got so much worse is what is causing me to start struggling with the ASD, which in turn makes me more depressed.  I need to find some way to break the cycle of negative thoughts, as you suggest, but unfortunately the only thing that's been suggested is "just stop thinking it" which I didn't find helpful.

I also need to know how I might be able to identify my anxiety "triggers" - some mornings I wake up anxious (it feels like terrified, but this is probably me overreacting) - and I'm not aware of having been (conciously) anxious before going to sleep, or of having been dreaming.

I realise you may not be able to answer any of these questions, but do  you have any ideas of where I might be able to look for help to point me in the right direction?

LadyNicotine

Ladynicotine

I'm not sure you are doing anything wrong and yes I know its not much consolation to you that others also suffer with ASD, but you are not alone on two fronts. 

Firstly, Many with ASD ask themselves exactly that. What am I doing wrong? Why am I struggling and everybody else seems to be able to cope, Why am I depressed? Why is it getting worse? If you are one of those people, then knowing the reason behind your anxieties can be the key to learning to manage them.

Secondly, You are also not alone in feeling abandoned. Even parents with children on the spectrum are more or less left to get on with things with little advice.

Knowing you have a condition can affect people in many different ways. You could feel relief about knowing why your depression has affected you for instance or you could feel even more depressed about being diagnosed. Personally, I find the former much more productive than the later.

Treating a symptom not the cause is a common affliction in our society today yet with ASD it's imperative in my view. With something like ASD their is no treating the cause only management of the things that make you anxcious and produce the symptom of anxiety or depression. It' s the reverse in many ways to what you might think. Knowing this is often the first phase to moving forward from diagnosis.

May I be bold and suggest that i think you maybe trying to treat the cause, not manage your symptom of anxiety. Looking for 'a cure. with a condition that cannot be 'treated' in the conventional sense (a social communication disorder) is often futile. It's a lifelong neurological deficit which is pervasive. Of course you can learn the rules that govern social communication and clearly you have already to a certain extent, because you hold down a job and have gotten by.

Reading ones own signs of anxiety can often be quite difficult and our knee jerk reaction to things that make us uncomfortable is often to recoil. However, sometimes what we most need is to push ourselves outside our comfort zone and sometimes we need to recognise that a situation is too overwelming and move away. Balance is another key. We have to try and experience a multitude of things many times over to get a good gage on how we are affected, but our awareness needs to be more self-awareness focused.

I have two sons with ASD. One embraced his diagnosis and is learning to find coping strategies to sooth his anxiety and thus control his depression. The other spends his whole time consumed with wanting to be someone other than he is, which increases his anxiety. For that reason he's exhausted and also now very deeply depressed.

I always feel being high functioning can be the most cruel of afflictions. You appear that you can cope and others assume you can. Yet inside you can be desparately calling for help.

Finding ways of reducing anxiety seems to me to be the best course of action. Mindfulness, CBT, Self awareness classes, anything to raise your own awareness of why you feel a certain way and acting on those indicators will begin to reduce the anxiety and in turn lift the depression.

If we are anxious for prolonged periods we may become depressed. the more we feel depressed the more anxcious we become and before you know it you feel the depression deepening. Breaking the cycle is key.

Mindfulness for example is the practice of acknowledging ones feelings and thoughts as they come to us and if we choose, then letting them go. Great practice to break the cycle if your thoughts are stuck in a never ending circle as many with ASD are.

Each person on the spectrum reacts differently and for that reason the journey is a very personal one. What works for one, may not work for another, however once you begin to recognise your triggers, things will change and hopefully you may find the depression lifting.

I hope my rather drawn out and muddled explaination is of some help. I wish i'd been told some of this years back. Perhaps I would not have wasted so much time searching for the holy grail.

I wish you luck

Coogybear XX

Hi True Colours

It doesn't sound cynical at all.  Unfortunately while the first part is true, the second part (admit you're having problems & you'll be offered help) doesn't seem to work in my case.  I've had CBT, which had no effect.  I've had CAT, which made things worse.  When I told my shrink this, she refused to believe me.  I've a long history of self harm (although I'm not currently, as that doesn't help either), & have made two suicide attempts.  The only thing stopping me from making a third is that I can't yet work out how to let someone know that they need to come up pick my cat up so that I'm already dead when they get there, but she won't start going hungry.  I've told therapists, & my shrink, this & I get no reaction - which is what makes me think she doesn't believe what I'm telling her.

LadyNicotine