Autism and poverty

Yes, following our experiences with services in recent years I no longer regard them as experts at all.  In fact I am leery of handing over any more power to them than they already have and now seek help quite cautiously and with diminished hope.

If I could find something person-centred with access to specific training and support where this is in line with our own sense of what might usefully be developed, i'd go for that.  However, services seem to be set up with a variety of one-size-fits-all, time limited CBT type interventions that generally aren't tailored to be more autism-friendly or work, gradually and tentatively, with an understandable reluctance to engage, or with families rather than individuals.  

So, on essence we're mostly on our own.  

I do adopt a person-centred approach with my sons.  Basically this means that in terms of their needs and possible plans, I take my cue from them with no assumptions or judgements as far as possible.  

Overall though, I'm not sure what is meant by getting someone the help or support they need because they might not be in a state of mind to communicate this, they might not want to confide or share and, even if they did, their idea of what they need might be neither available or affordable.  Nor even safe if they want to sleep rough or adopt an extreme diet etc.  

Once, after 3 years with the early intervention in psychosis team, our younger son ran away from home to escape "negative energy", was reported missing and then eventually brought home by the police.  A WPC took me to one side and advised (just as a couple of his 6th form tutors had done a few years earlier) that this might be the time to "get him the help he needs"!  She was, I think, quite shocked by my list of services already tried and the lengths to which we'd already gone.  

I really wish I could be of more help to my sons.  Possibilities are opening up with my older son and we have long conversations that help us to get our bearings and make better choices as regards support.  But my younger son will barely speak to us, in spite of us building what we think is a relaxed environment and holding space for him.  

If I can't get any help from MAIN then it does seem as though we're going to be left to go through our own processes with all of this.

Robert, you’re not rambling but just self-negating as you’ve been hard wired to feel rejected. You certainly  aren’t here on the forum.

Yes, poverty whether financial, emotional, psychological can all be deeply damaging and can make the journey to a better and more contented space more challenges and prone to more hurdles.

I think I get it, I've felt so much resentment myself - strangely the diagnosis is really helping me with it though. I think cessation of the nagging doubt that it's all my own fault somehow lessens feelings of anger and resentment - I wonder if the sharpest pain is from internalising the bullying and blaming ourselves. You're not responsible for how distressed your sons are and I'm sure they'll come through it as you have. I'm so sorry you're dealing with so much - the world's retribution for failing to groupthink seems really disproportionate doesn't it?

I couldn’t agree more. I burst out laughing when I realised I had been basing my whole life on the hidden belief that I’m not good enough! I started dancing round the house saying, not good enough for what? To be a ballerina? To be a footballer? To be a doctor? What exactly was I not good enough for! Lol! I then found out that this is the bottom line for many people and many people don’t ever realise it, so they go on building their life on the subconscious belief that they’re not good enough. 

Now I go more on, am I at ease with what I’m doing? Am I enjoying what I’m doing? If this was my last day on earth would I be doing what I’m about to do now or today? Do I feel joyful, alive, happy, content etc etc. 

As you said, it’s a never ending journey so we might as well enjoy it. I pay no heed to social norms or what other people do or don’t do or their thoughts about me are or aren’t etc etc and I’m not bogged down with the thoughts of others through tv and films and music etc. I live my life according to me and I learn as I go. 

Well, thank you for that. Like everyone else here I am also in a continuous process of learning. Over my life I have come to realise how I have also become my own obstacle at times. I think the hardest thing for me to start to learn throughout my life was to stop focusing on one single thing at the detriment to other things because we have various needs in life, which can be both hard to achieve at times as well as finding a balance between those needs so that we can find a sense of fulfilment in life. I suppose that's why I feel like many people can be restricted by these barriers they place on themselves when those barriers don't actually need to exist in the first place.

A good example for me was the belief that my life had no value and the only value I could find in life was through work, the only way to find success was through work. So now I am seeking to re-evaluate my meaning and value in life, which is an ongoing process.

Life is simply a journey without an end, so instead of trying to focus on an end so to speak just try your best to live the journey with whatever challenges may come along. There will be challenges that you can deal with and others you can't but no matter what the journey will always continue even if you have to walk a different path than the one you were expecting to walk along.

We get out of life what we focus on most. So if we focus on not being poor, we will end up poor because our focus was on poverty and not on abundance. 

And I know how you feel about wanting to provide for your family. That's the very thing that has driven me. So of course, I got what I focused on, a need to provide for my family!!!

Now I understand that. I can take a different approach. I will however always give whatever I have, to give my parents a better life. See, talking is good. I am uncovering many hidden limiting beliefs in me, although most people, if they read this, probably won't know what I'm talking about. But I do so thank you ShadowPhantom, by sharing your experience you have helped me uncover a few false limiting beliefs in me. 

It's not always due to a lack of not knowing what we want or being committed to that want, that prevents us from getting what we want. It's also these hidden road blocks that have to be uncovered so they're out of the way. Thank you 

I can agree with that.

My father did have wealth but when I was extremely young my father was basically stabbed in the back (metaphorically speaking, not literally) by the people he was working with so he lost everything. Like you say, poverty is relative, so if someone feels superior because they're richer than someone else it can lead to bullying behaviour. I had to live with many children insulting and bullying me while insulting my family too for their poverty. My father didn't choose for those he worked with to do what they did but he had to live with the consequences.

Combined with the moving from home to home and school to school with my parents struggling to afford things, it led to me feeling like life was insecure and unstable. Therefore, this fuelled me to see that getting educated, getting a career and getting a decent job would get me out of that. I wouldn't get bullied for being poor, I would get recognised for what I was capable of rather than just being seen as poor, I would have the money for stability and security in my life as well as being able to demonstrate that hard work and ability would pull me out of the poverty trap. I could then help my parents because I feel like I can never repay them enough for what they've done for me throughout my life.

I came from a background where love and family were considered extremely important so I was raised with those values. Of course my parents weren't perfect but I don't think any parent can be perfect. They tried their best, which often meant that my sister and I weren't always the first priority. I have a lot of admiration and respect for my parents though considering what they went through as well as how they managed to keep going no matter how bad things were all to be able to earn enough money to survive. It also did give me trauma in a way, because as someone who was more prone to mental health issues, I saw myself as a burden and often thought that maybe if I hadn't been there then maybe that could have helped make a difference to their lives.

I also think that due to my behaviour, which our family didn't know about, my mother became very over protective of me, while my father (who isn't diagnosed but my sister and I do believe he has autism) was always angry and often venting on those around him, which only made me feel worse about myself. So, as I say, my parents weren't perfect but all my experiences came together to make me say to myself "I will not follow in the footsteps of my parents. This will not be my life." Yet here I am still completely reliant on my family to help me given my current circumstances.

You do all those things, i.e. care for others because for whatever reason, you feel the need to care for others. Otherwise you wouldn't do it. Unless you feel obligated and if so, why? Where does that come from?

If you want more resources, get clear on what resources you need and write them down, in detail. Including how that particular resource will help you. What benefit will you gain from it?

With that you have a start. Although often times we need support just to get to that stage. We can often be so entrenched in the situation that we can't see the wood for the trees.

This is why forums like this are helpful. We can share what's going on for us. Face to face support groups, I've found, have been invaluable also. I'm currently part of two local autism groups although I mainly only go on the days out with one of them. But talking to others in similar situations and being around people who understand us and are similar to us etc, can be a huge help in itself. It can help us get things in some kind of clearer perspective as well. Although I've never really understood the whole friend thing, I'm learning all about friendships and the value of friends which has surprising benefits I wasn't aware of.

Until you know what you want, you can't get it and when you do, you will get it, if you don't stop 'until' you actually do get it. And when we open our minds (I know, difficult for us by the very nature of our autism) but we can do it when we can see the benefit of doing it and with support.

I just thought I'd say that your comment about the therapist seems to sum up the problem with many services that are supposed to exist to help people yet they don't seem to understand their patients.

You go to them for help, then they seem to redirect the question back at you, which leads to you feeling confused and frustrated that their help seems to not achieve anything. They're supposed to be the experts but they're clearly not the experts because they fail to even try to understand the individuals they're dealing with as though a one size fits all approach will work on everyone.

I think only your sons will be able to answer the question of how independent they can become, but that's also based on them getting the support they need otherwise who knows how long that may take if they have to go through their own process.

I've learnt a lot of stuff on my own and managed to find my own way, which is an ongoing process, but I do wonder what difference it could have had if I had been diagnosed at an early age.

I'm not sure.  Some of this may well be to do with me gradually moving into the more traditional female role.  This has happened over a number of years and some of it also has to do with my husband's severe depression as well as my sons' difficulties.  I've been moving into the role of carer for some time and around 4 years ago this was compounded when my mother had a stroke, also needing my involvement. 

Some of it really feels OK to me.  My mother helped us a lot when our sons were younger and I want to help her now.  It's also fair to say that, due to other pressures, I wasn't exactly the parent I could have been, I missed the whole autism thing completely and my sons are now in early adulthood as we gain awareness and figure out how best to proceed.  So I do feel quite a bit of responsibility.

But I'm not sure I'm using my time to best effect.  I also cannot say how much of my sons' situations is due to disability rather than other factors.  Also what we might reasonably hope for and whether they can actually be more independent.  Pointless pushing for the impossible but how am I supposed to know? 

I feel hampered mostly because services only seem to be geared up to help individuals rather than families.  And I feel need help as a parent to adult children.  Meanwhile, I'm running our finances down trying to get prompt assessments privately because I feel bad for not recognising the problems at an earlier stage.  Plus left with rent to pay for a guarantorship we signed before our son failed to progress on his degree.  

The lack of support and the eroded finances leave me feeling anxious and emotionally drained too. My therapist simply agreed with me and stated, empathically, "Yes, that must be difficult" whilst all the time I am almost screaming, "Yes, but what am I supposed to do?"

Overall I think more resources are required.  I guess that feeling is common enough though.   

We've all got our stories but I seriously love the way you tell yours. You have a truly captivating way of seeing the world and you're a gifted writer. And you have a way of imparting how you experienced it at the time while keeping an observers perspective. You're a very talented writer. I wish I could put my experiences into words the way you do. 

More rambling from me on how financial poverty and emotional poverty are linked.

Children go through growth spurts, where there is a period of rapid growth followed by stability.

When I was around 12, I outgrew my existing clothes ( and I looked ridiculous with trousers looking like drain pipes etc.)  And my mother was so ANGRY that she had to buy new clothes for me ( financial poverty).  She bought new clothes which were all a size or two sizes too big for me.  Saying I would grow into them.  Again I looked ridiculous with trousers looping around my shoes etc.  But I had stopped growing and the clothes wore out without me growing into them.

I'm the opposite. I absolutely love it when I don't have much money. And it always seems to happen at a time when I don't actually need much.

For example, for the last two years, I've been living on benefits, which started in debt, so I rarely have enough money to buy food and rarely, in fact I never have enough money to meet my full financial commitments and I pay nothing towards the debts.

It's so freeing. So empowering (to me), probably because I'm so s**t with money. Honestly, it doesn't matter how much I earn, in fact, the more I earn the worse I am at 'managing' it, so no matter how much I earn, I never seem to get the life that other people have ~ I must have thought that those things, homes, cars, holidays etc, were brought to you in the night by the elves, at the end of each pay cheque and they somehow forgot to drop mine off!

So having less money, to me, is a relief. I'm not saying I will always live off benefits, on the contrary. But I need to find a way to earn money in a way that enhances my life and this time, I will get help with managing my money. I've already got more awareness around it, since I got my diagnosis. And having no money has really helped with this.

Also, I've never put my idea of security in money, people, jobs or houses or any of those things. I could never understand why people did that. I used to think, and sometimes I would even ask them, what if there were no jobs or your house got destroyed or the people die or whatever - what happens to your security then? It seemed crazy to me to put your faith in such things. So I don't define myself in any way by the amount of money I have or don't have or the amount of things that I have or don't have etc and I always seem to have what I need, even if it's not what I thought I needed.

I live in a constant state of gratitude, due to having very little money. Gratitude that I live in a country that at least keeps a roof over my head while I'm in this burnout. But if it never, then my freedom simply goes to the next level and I become homeless, or sleeping rough, as I prefer to say because the whole earth is our home and you have more freedom when you don't have an actual home. I've lived rough a couple of times. You simply accept that that is where you're at and like anything else, you make an adventure out of it ~ don't you? I do.

I like going to restaurants to eat because it's a change of environment and it means I don't have to sort the food out. But when I don't have the funds to go then I simply don't have the funds to go. I don't give it any more meaning, such as, this means I'm poor. And when I don't have food to eat, I fast. I recently did a ten day fast and I swear to god I've been thanking god ever since for making sure I had no food because I certainly needed to be forced into that fast. I had got out of the habit and doing it made me realise how much I needed it.

Christmas is even more special when you have no money or energy to put up any decorations or cards. You are forced to acknowledge what's really going on. The spirit of Christmas. It's so stress free, exciting, childlike, and the chocolates and treats are extra special after being without them for quite a while.

I even got a fray bentos pie in the bags of food I got from the food bank. It's something I would never buy but something that holds good memories for me. So I can't tell you how much I enjoyed that pie. And I'm a raw vegan! Lol!

The Christmas spirit is alive and well. It's just that when we're busy buying presents etc, we don't notice it. So being in the position of not having the money and energy etc to get involved and do what others are doing, I was able to really get to experience the Christmas spirit, which taught me so much this year.

I love trees so I'm in raptures at Christmas and I like to get the biggest and best real Christmas tree that I can find. I spend hours just looking at it, enjoying it and missing it when it's gone. But I haven't had a tree for the past few years due to me focussing on getting my life together and it hasn't lessened my enjoyment of Christmas one bit. And it doesn't mean I'm poor. It's just what it is. The trees never gave me pleasure, I got pleasure from looking at them, but the pleasure was always in me and doesn't disappear just because I don't have a Christmas tree.

I agree that a steady flow of income can make life much easier in many ways but I would be seriously worried about myself if I felt I was deriving my sense of self esteem, wellbeing and security on how much money I had coming in each week. But then again, like I said, I lean more towards a simple, minimalist life and by living without money, it doesn't get much simpler and it's enabled me to concentrate on myself, to find ways of supporting myself financially in a way that doesn't burn me out and that more importantly, enhances my life.

I wouldn't mind somebody looking down their nose at my home. It would give me an opportunity to pray for them because it must be terrible to live your life, thinking you're better than people while not doing anything to help them and often times, trying to make life even worse for them. They are the type of people who need our love and understanding the most. They're living under a terrible illusion, believing that having what they consider a 'better' house than somebody else, somehow makes them a better person with unquestionable rights to treat that person any way they want. They've lost touch with who they are and seriously believe that the size of their house makes them who they are. They need our love, understanding and compassion.

So if they look down their nose at my house, hopefully that will mean they won't come to it, because there's one thing praying for them but to have them in your sacred space would be another thing altogether! Lol! If I'm going to share my space, I'd rather it be with someone who's more like me, who doesn't judge a person by what they have!

So to me, poverty is a mindset. So once I've got my mind around all this earning a living business, and I've found a way how to do it in a way that doesn't drain me but gives me joy, then I will have more money. I've already decided how much I'll have, it's just a matter of bringing it alive now and with all the support I've had this year, I think by the end of next year, I'll be getting somewhere.

Yes, for me it began with financial poverty but then radiated out as the lack of money led to even more exclusion from social events, school trips and even just the costs of getting about and attending free stuff.   Plus accentuated the feelings of difference when my clothes were a bit scruffy or strange, I didn't have the same magazines as other girls, no access to the music they all started discussing or even to my parents' booze (they had none).  I even felt I couldn't accept others' invitations out of fear that I'd have to invite them back (not that I got many).      

So I'd say that financial poverty brought emotional damage in its wake.  Feelings of anxiety, insecurity, difference, shame and lack of autonomy or choice were never far away anyway, but having no money made them worse. 

Yes, it'd be impossible to separate out the strands.  And, because my husband had similar experiences to yours, I know the true value of feeling loved and wanted.  This was never in any doubt in our home.  So I appreciate what you're saying about love and acceptance.  I have a certain soundness in my core being that I think arises from having been able to take these for granted from my earliest days.  

But relating it all specifically to autism, our family poverty grew largely from our parents' inability to navigate the world, to relate to others and to hold down a job which would afford a basic level of comfort.  I'm not saying that much of this wasn't caused by a general lack of acceptance and inclusion in the workplace and within society, and it clearly doesn't need to be this way.  But practical know-how was in short supply in our family and, combined with social difficulties, our earning power was very much reduced.  Especially considering that none of us had been diagnosed and so we didn't recognise the nature of our difficulties.  Generally we just got blamed for it.   

At home our furniture was dirty and fraying, the lino and worn out carpet were missing in places, the bathroom was full of green and black mould in summer and ice in winter and the kitchen was falling apart and, like the rest of the house, filthy.  Some of this was due to a lack of money to spend on cleaning products, some due to my dad's  problems with personal hygiene, hoarding and organising things while my mother eventually gave up.  The one time I really tidied up and invited a friend round, she was visible shocked and later gave me some of her pocket money to help.

I wouldn't have been bothered if I'd live in the same kind of "mud hut" as everyone else - it is indeed relative.  But I felt as though our family were somehow peculiar in their poverty, not only incapable of earning a proper living but incapable of using the benefits system or relying on friends or family too ("Friends, what friends?").  It all had a shameful, secretive feel to it.  I can once remember our cousins turning up unexpectedly and us all hiding behind the table so's we wouldn't have to invite them in and they wouldn't see the squalor in which we lived.  

Meanwhile, both of my parents were very intelligent and articulate people and it became very difficult for others who did eventually cotton on to actually understand, as if we must be deliberately choosing all of this.

I also remember being in the dinner queue at school and the girl in front of me looking at the free lunch list and then looking back at me and saying, "Your name's on there.  I think they've made a mistake so you need to tell them about it."  "No mistake" I said. And her reply was, "But you're intelligent so you can't be on that list!"

In many ways I wonder whether the poverty/high education combination was more generally puzzling to those who noticed our family.  And for me it was also linked with great difficult in feeling accepted at school or knowing where I might belong.  I got put in a top set with others who could afford the nice version of the school uniform, the school trips and the extra magazine subscriptions (they bullied me in subtle ways), but our household finances were more akin to those of the extremely rough bottom set kids (who spat on me or pushed me against the walls in the toilets).      

Just a bit more money and a few family connections/friends would have made a huge difference and I suppose my sense of insecurity might have been reduced.  

At the moment it's increasing again as costs associated with uncompleted college and university courses build up, plus our younger son refuses to engage with services so the necessary evidence for his ESA claim won't be there the next time one of those little brown DWP envelopes lands.  It's all has that feel of history repeating itself.   

Your question beat me to it.

Are we discussing just financial poverty or emotional/psychological as well?

For me the emotional damage is even worse than lack of money.

I went to normal local  schools where we were all poor.  But I was still treated badly, no friends, in the bottom classes.  

At home, my father in particular made it very clear that I was an embarrassment to him and people mustn't find out that I even exist because it would affect his reputation and standing in the community. 

Then as I got older things changed.  But didn't get better.  Just different.

At school I improved academically and when I was transferred to different classes.  The new class didn't really accept me. And the old class shunned me totally.

Enough rambling for now.  

Totally agree, when financially secure, it's much easier to have self-esteem and to feel a sense of security and wellbeing. I had the inverse of your childhood 'balance' - my father came from poverty but we were 'petty bourgeouis' (he went to night school) and the home was orderly and comfortable if shabby - but I didn't feel loved, on the contrary. I was made to feel like some sort of monstrous embarrassment and disruptive burden on my parents. I went to a posh grammar school and was bullied by teachers and other girls alike, I've never been able to separate to what extent I was bullied for AS or for being lower-class. I always thought that being loved and accepted was far more important than material things but I also see how pulverising it is to be socially excluded because you can't afford restaurants etc and to have people look down their noses at your home, and to get sneered at because you don't know 'the form' - and the incredible value of being able to 'buy yourself out' of practical/emotional crises. Poverty is relative, as they say. If everyone lives in a mud hut that's just normal.

It's impossible to separate the emotional fallout from the grinding pressure of insecurity when it comes to poverty. But as long as you have food and a warm place to sleep, it's really all about whether you can relax in a basic sense of security (will there be food and shelter tomorrow?) and of social pressures/casual bullying.

I've often wondered whether my habit of forcing myself to try to fit in, earn a living etc etc despite the appalling fallout on my health and wellbeing has more to do with a somewhat punishing upbringing or just that women are just expected to get on with it and fit in whilst boys are given more choices? I think it's important to be as accepting as possible - but at the same time you can't be expected to carry 3 people? I don't think anyone is up to parenting really, and I do think that AS women often make better parents however hard it is to cope with all the demands. You'll find a way through, but I'm feeling the absence of support that AS people seem to experience within extended families - or maybe all single mothers are grappling alone in the dark?

Thanks again.  It's true that I'm making the best choices I can in the circumstances.  I think I'm living with high levels of fear and anxiety after everything that's happened.  I honestly thought I was completely up to parenting but as it's turned out I'm hardly coping. 

I had hoped my sons would have flown the nest by now but it's very much as if they've seen the adult world and completely retreated in response.  At the same age I did the opposite and forced myself to keep going irrespective of the high levels of distress inside.  But the underlying feelings are very familiar to me and, looking back, I can see that I could have easily gone the other way.  It's all felt a bit like walking a tightrope so in many ways I should have recognised the true nature of the difficulties.

Still, here I am with two adult sons and I'll continue to do my best to support them in their choices.  My conversations with my older son are slowly moving away from blame and into a more constructive direction, but who can tell where this will all lead?

I was always the withdrawn type. Then I had to force myself when I got to university. It was a long process and it was probably only in my late 20s that I felt able to start a process of being a bit more open until I was finally diagnosed at 32.

Being a parent is for life that's for sure. I've made the choice not to have children because I just don't think I could cope with it all, the relationships, the responsibilities, the bringing children into a world that could only bring them pain and suffering, etc. My youngest nephew was the first in our family to be diagnosed and even seeing what he's going through as my sister has recently pulled him out of secondary school, which he only started this year. I can't even begin to imagine what his future may be like.

I'm sure things are extremely difficult for you and your family but you're doing what you can with your limited available options. I can only offer my written support and hope that things will work out for you. Whatever happens will happen and all you can do is know that at the end of it all you did what you could so don't blame yourself or have regrets.

I'll share another story too. My oldest nephew, as a baby, was rushed into hospital one day while his parents were at work. He was with a child minder. I'm going to avoid details here, but there was evidence of brain injury, which led to the involvement of social services. Their first course of action was to take my nephew away from the family and put him up for adoption. At the end of it all we got lucky in a lot of ways and my nephew was eventually returned to the family but it could have so easily been a different outcome. At the time, his parents put faith in the system to recognise their innocence whereas my initial response was to contact the solicitors due to the fact that I had no faith in the system to recognise their innocence. That delay could have so easily led to the loss of my nephew to the adoption system but, like I say, in a lot of ways we got lucky even as his parents were under continuous attack from the system that treated them unfairly.

So, like I say, I don't know how your situation will end up, but please don't blame yourself for whatever happens because I know you're not to blame. I'm sure others will also state that you're not to blame.

This is why I've made the choice to accept whatever future may come my way and I will not blame my parents because they tried their hardest to do what they could. I too tried my hardest to improve my life but it has so far ended in failure, but I don't blame myself because I tried and did what I could. This is why I choose to participate in such communities, in politics and to do what I can to help make my voice heard because it's the only thing I feel I can do that may stand the chance of making a difference. Even if not for me, maybe for my youngest nephew or the generation after that. I don't regret any of my choices in life because no matter the outcomes I made the best choices I could considering the circumstances.