Autism and poverty

Thanks Shadow.  The inappropriate services were basically thrust upon us because our son was deemed to be at risk and it was thought that he had schizophrenia.  So we'll not be going back there again.  

I have an appointment with a local autism charity, MAIN, early in January and I'm hoping they'll be able to advise us too.  The problem there is that this is a follow up to my own diagnosis and will be there to consider my needs and not our needs as a family.  I think they focus on things that might help me to work or socialise whereas I want 1:1 help with family dynamics and understanding ways in which I can help us all.  As a 55 year old woman my needs for help with getting a job etc lie firmly in the past.  I needed that when I was about 18!  I'm hoping they'll be able to signpost or give me some clues though.

The quality time is always available and I view this as a priority.  Our older son talks to us quite a bit and even if it's just to vent I see this as a safety valve.  I struggle to engage with our younger son, though, as he mostly avoids us and is very withdrawn.  So far nothing has really helped and he will no longer engage with services either.

I'm hoping they both know we love them.  We still tell them every so often.  

I've a feeling we're in this for the longer term though.  Your interpretation of what we're experiencing is broadly correct, just I think things are much more severe than can easily be conveyed.  I'm basically very scared if not traumatised by what we're been through and this also makes me worry about the future, including whether our finances can withstand all of this.

Hey this is a very interesting topic to discuss and hear people's opinions. Also very relevant I think. 

Personally I am involved in the organisation of a symposium on Neurodiversity (incl. autism) and Employment, and I think the high unemployment rate and differences and difficulties form the employment sector is explaining a lot concerning the 'poverty' in people with autism. I would be super happy to bring up this topic at the next symposium and hear everyone's view on how we can improve this! 

For more information about the event, last event programme and videos are to be viewed here: acechildrensoccupationaltherapy.com/autism-event-at-kcl

Updates about the upcoming event (July 2019, date to be confirmed) is to be found here: neurodiversityworkforce.wordpress.com

I'm sure you do. As a parent you would surely feel a sense of responsibility.

Now acknowledge some of the things you're saying. These are some of my thoughts but I may be wrong because you're the one in the situation not me.

1) You're learning and reflecting on things, which means you can start a process of changing that relationship with your sons into something more positive.

2) There's a difference between anger and blame. Your son is angry and in the process of venting you can become an easy target. It doesn't necessarily mean that he blames you but clearly he needs to vent his anger as part of a process so all you can do is be there for him as part of his journey through that process. It may be hard but don't take his anger venting personally and make sure he knows that you love him.

3) Being batted around various people and services is only going to end up escalating things, especially if they don't properly understand you, your son or the situation you're in. So maybe you need to ask yourself if these services are what is needed or if there's another approach? I don't know the specifics of your circumstances but maybe you need to see what else may be available, even local charities. So why not try having a bit of a look around in your area to see what else may be available.

4) As I have said, maybe you need to find some quality time to actually sit with your sons and talk to them. It may not be an easy task but your experiences, awareness and understanding may be more useful than you realise so don't underestimate yourself or devalue yourself. It may not be easy but be open and honest with them, acknowledge what you've learnt, what you can do, what you'd like to be able to do better, etc.

Being a parent has got to be the toughest job in the world, so I wish you luck.

Yes, I do feel some ongoing level of responsibility because things have gone so very badly for my sons and it's become clear that I have repeated some of my own parents' patterns of parenting that were less than helpful.  

My older son is very angry with us for not picking up on the things that were wrong and seeking help at a much earlier stage.  My younger son will barely interact with us or indeed anyone and his situation resembles that of an "hikikomori".  I am aghast at how things have gone and the past few years have been both disastrous and ridiculously expensive as we try to buy in help when we can.  They've also been extremely distressing as we've been batted about from one service to another (including crisis teams and the early intervention in psychosis team) before possible autism was even mentioned.

Following on from my own diagnosis with autism I finally have more of an inkling as to what has been happening all along, including my dad's difficulties at work, his fear of doctors and services that meant nothing was ever tackled and the general lack of acceptance or support that really cut us adrift.

I now want to focus on what can be done, definitely favouring the approach of learning whilst being supported wherever possible, but it's fair to say that I really do fear one of them ending up on the streets.  A few years ago, in fact, we were only able to prevent this for our younger son by affording alternative accommodation at short notice.  Without that he'd have been another young and vulnerable person sleeping rough. 

One very anxious mother here.  And yes, I'll be honest, that part of me which blamed my dad is only now fading away and I feel really bad for never realising he was probably autistic too.

That's why we need to build experiences in a positive and supportive way. If there had been a better way to gain experience than what I went through then I would have preferred it. The good old throwing someone in at the deep end of the swimming pool without support and seeing whether they sink or swim. Hardly the positive approach to building someone up when they could have still learnt to swim through being supported while being in the swimming pool at the shallow end.

That's the harsh reality of the world though. You want someone to be there for your sons but they may not get that support. It doesn't mean we shouldn't be striving to change things in the longer term but like you've said it leaves a lot of problems in the shorter term that may remain unresolved for decades.

Poverty and bullying contributed towards issues for me that have also taken me time to process, of which I still am processing. I think I'd call it experience building rather than character building though. Maybe a slight difference for me is the fact that I channelled my anger into pushing myself and improving myself because I did have some belief in my ability and potential but was never able to fully demonstrate it due to lack of support and opportunities. Also, my parents never focused on what they didn't have, they focused on what they could do to keep going and to try to make things better.

I'm not going to say there's an easy answer but all you can do is live your life and try to manage those issues as best you can because you currently have no control over what you worry about. That's easier said than done but it's the truth.

I get the impression that you're putting everything on your own shoulders and feeling responsible for everything that has happened, which will no doubt lead to feeling guilty and potentially feeling like you're a bad father for bringing them into this world and not being able to provide the support you feel they deserve to be able to live a good life.

You're not a bad father though and I'm sure your sons wouldn't blame you either. Maybe what you need is to find some time to sit down with your sons and talk to them about this. Maybe it will help with your sons needing to talk about things or ask questions that will help them in their own lives. However, know that if your sons find themselves in poverty that it will not be your fault.

I don't blame my parents for their poverty or for my poverty. If this is the way my life is so be it. If I have to lose everything and end up on the streets so be it. However, I will never blame my parents. I am angry about a lot of things in my life but I refuse to let my emotions consume me because what I need to focus on are my current options of "What can I do?" From there I can take the next step forward and see where it takes me.

So, I can only pose that question to you in the hopes that it may lead you to seeing what actions you can take.

I have very mixed feelings about it.  In many ways the poverty and then the school bullying demolished parts of me and weren't character-building at all - well, not in any positive sense.  It's taken me a long time to rebalance myself away from grasping for opportunities and going for decent salaries, even though I doubted my suitability for these jobs.  

I also find it's led to a belief that, however bad things get, there'll be nobody to help us and for this reason I feel more isolated in the world.  This has led to me feeling angry and disconnected too.  

It's true that it's a balancing act and I do want to foster coping skills in my sons.  To that end i don't rush in to help and have never been  "hovering", ready to rescue them from consequences. 

But I'm very afraid of the harsher realities associated with poverty.  I think I actually have some scars from all of that and these have undermined my confidence and capabilities both in and out of the workplace.  Along with the effects of (undiagnosed) autism I think my earnings have taken a significant hit too.  

It all worries me because I think I've learnt more about the factors which undoubtedly affected my dad and reduced his earnings, but far too late in life for anything to be changed for him (he died 3 years ago).  It's all still open for my sons, but some troubling signs are there and I really hope that we're not at the beginning of a similar cycle.  

I was thinking specifically about financial poverty in my original post but I also feel these can be strongly interlinked. 

During my teenage years, for example, our poverty impinged on just about everything else.  If, for example, you'd like to go on a school trip but there's no money for that, then you simply can't go.  Likewise, any extracurricular activities or family times away from the home.  Plus, if the home is in an atrocious state of filth and disrepair, you probably won't be inviting friends home either.  And you'll be reluctant to accept others' invitations, knowing you can't return the hospitality.  This all impacts on you psychologically, particularly if you're already finding it difficult to connect with others and make friends.

There was no shortage of love in my family home, so in a way many might compare and see me as having enjoyed great wealth.  But I can remember feeling as a teenager that nobody should have to put up with this level of poverty and I wanted to involve social services (whilst not, of course, knowing how to go about this).  It was a huge puzzle to me as well as a source of considerable distress - along the lines of, well, if I'm so loved why am I denied basic necessities and effectively excluded from most activities?

Now, as an adult, I can honestly say that my psychology has been deeply affected by this.  I don't think of myself as poor, psychologically speaking.  In fact I have a rich inner life.  However, there are clear areas of damage that have had a long term effect.  

As it stands, I find that when my finances are secure I feel buffered in the world, I can buy myself out of some difficult situations, my confidence levels increase and my general relationship with the world and other people is altered.  It definitely has an impact on my sense of self.  

The way I see and experience the world, there is only one self so focusing on the self is the only thing we can do. To do anything else, is to focus on an external illusion, which of course, will never really change anything. 

I don’t think money is power, far from it. Like everything else, money is neutral and only takes on meaning when we give it meaning. It can certainly be used in powerful ways, for good or evil, but money itself, has no power. 

Change is a constant in the external/physical world as things come into existence, live out their life span and then die, but some things never change and when we adhere to those things, we can achieve and have anything we want, because that’s where the power lies. 

He’s a really great writer and a great photographer ~ I love his writings and his photos. He’s got a great sense of humour. He’s a kind, thoughtful and generous person. He would, in many respects, rather go with the flow as opposed to rocking the boat, in order to keep the peace. And that’s just a few things :) 

I can understand why the thought of poverty haunts you. I've just come to the conclusion that for now all I can do is try to do what I can with the things I do have power over. It's not easy but I always think to myself that I am simply privileged to be alive and although life can be scary and difficult there's still much we can appreciate no matter what our circumstances.

As for the idea of helping the next generation, the only thing you can ever do is help prepare the next generation for the challenges that lay ahead of them. Yes, the next generation will no doubt face difficulties and challenges, whether they will be similar to our own or not. All we can do is provide them with the skills and knowledge to be able to endure and rise above such things rather than to give up and give in to despair.

I often find myself thinking that my circumstances growing up were a driving factor for me to strive towards something greater. If I had grown up in different circumstances I don't know exactly how it may have impacted me so growing up seeing my parents struggle really had an impact on me. So, in a way, sometimes growing up in poverty can teach us a lot about the true value of things and the things that do matter in life. I was thankful to have a roof over my head and a mattress on the floor. However, we also need to guard against the idea of over protecting people because then that can also lead to depriving the next generation of what they will need to learn if we try to do everything for them. We need to build them up and provide them with strong foundations that will allow them to feel confident and prepared in knowing that there will be difficulties and that they can feel able to approach those difficulties with a sense of confidence and determination, rather than anxiety. It will not be easy but we can't always be there to protect those around us so we need to help them feel able to stand on their own feet and feel able to take the next step forward even if they're uncertain what it may lead to, to help them feel that no matter if they fall down due to the challenges of life that they can find the internal strength to pull themselves back up again. It may seem harsh in a way but the challenges we face help us build up mechanisms for coping and managing so depriving people of such things can prevent people from developing those skills of coping and managing. I always say to myself, the bullying and abuse I grew up with in school helped prepare me for life and my life may have been worse as an adult if I hadn't experienced those things in childhood and learnt to cope with it in my own way.

I agree with that. By figuring myself out through the issues I've had, the experiences I've been through, analysing myself and reflecting on all these things and how they have impacted on me has helped me build my own pool of knowledge about psychology, understanding my thoughts, my behaviours and through that gaining a greater understanding of how others can think and behave.

I also agree that disclosure is important now that I feel I can be so much more open about it as it helps to create greater awareness and understanding, even if the impact of such things may not be immediate for everyone. I currently work for an employer where I have disclosed my mental health issues and my autism. They have been understanding and supportive so while things may get stressful at work I have other people I can talk to who will do what they can to help me just as I try my best to help them when they have things going on because that's what a team should do. They actually want to support me and provide me with opportunities but the issue is that it's a small company run mainly on volunteers and doesn't have much spare money for things so I do feel quite honoured that they saw me as someone worth actually paying for from that limited pool of money, even if it's part time minimum wage. I know that the company has future potential so I'm gambling on the longer game to endure until I can get a higher salary and more hours.

Are we talking of just financial poverty here, or all flavours? I.e emotional, psychological self 

Yes, I agree, it is often easier to swim with the current but I’m not necessarily looking for an easy life and I’m not looking for acceptance where there isn’t any, or to change the world to go along with me. 

I had the same experience as you, as I think many of us have had, in that when we play the part, we get by but if we stop playing the part, we get excluded. So I take exclusion over trying to fit it, which isn’t necessarily easier, but it’s more rewarding. 

When I changed my inner world, for example, when I started to accept myself, the whole world started changing. Not in the way that the whole world suddenly began to accept me but in the way that it suddenly mattered much less, whether they did or they didn’t. And I started to see the world in a much clearer way. Clear enough to compel me to live my life in a way that serves me, regardless of whether that requires me to swim against the current. 

I certainly relate to putting in colossal effort for a diminishing return. But in the end, my colossal breakdown, due to my collosal effort, was my radical breakthrough. I realised that I was a square peg and that I’ll never fit in to a round hole, so now I don’t even try. Instead I’m working on how I fit in, in a way that serves me instead of draining me. I haven’t figured it out yet but I’m working on it and the less I try, the closer I get. I guess my attempts at trying are still embedded in the neurotypical mindset, which I now realise, isn’t necessarily right and that my way isn’t necessarily wrong, it just goes against the majority grain. 

It’s certainly not easy, finding my way, but neither was fitting in and this way, at least I get some rewards. I only started down the road to self acceptance when I got my diagnosis, so self acceptance wasn’t previously available to me, seeing as how I didn’t know who I was. But now I do, social acceptance doesn’t really play such a big role as I’ve learned that I can’t make people accept me and if they don’t, I don’t have to take on their non acceptance or let it effect my self acceptance. 

Many thanks.  What I fear is a vicious circle in which difference leads to isolation and exclusion, a precarious working life at best and possibly a whole rake of MH diagnoses which might otherwise not be associated with autism but which understandably occur in the wake of all of the other pressures.

There is some published research on this, for example:

" ... Although there is no established direct link between poverty and autism, there are numerous indirect links due to social, economic, and emotional stresses, isolation, exclusion, and unemployment; ... "

https://pure.qub.ac.uk/portal/files/23832147/BASE_Vol.5._Final_report.pdf

(quote on page 33).

Not sure whether I'll ever be able to return to work due to ongoing issues with my health but also my sons' situations, which don't seem to be letting up.  But If I do I will certainly disclose.  It does appear that things are moving on, if only a little.

That said, my issues began in early childhood, probably around the age of 4 when I first went to primary school and I think the other children somehow scented a difference in me.  So I think things would have to change in the education system first of all.  After all of the bullying and exclusion at school, I was a nervous wreck by the time I started work, and this affected my ability to trust others, present appropriately and certainly to be a "team player" (hate that term).   My issues were, of course, seen as my fault and I'm afraid I felt that I just needed to redouble my efforts in order to fit in.  At the same time, my parents had no advice or guidance to offer because their own workplace experiences had been so dire and the awareness and support for them non existant.  

To me it feels very much as though things have needed to move in a different direction for a long, long time and that, although I can certainly be part of a counter-culture, I also need to do what I can to protect us from poverty in the meantime.   

Agreed, and I see them as interlinked - understanding my own issues is closely related to understanding how society works. Change is partly about how I find ways to cope better with AS in my everyday life, but this learning also feeds into a wider collective understanding of shared experience in the world which is necessary to inform social change. The fact that we're able to disclose and be protected at work, for example, may be a bit hollow in practice but it's an important step forward gained by collective campaigning. Imperfect as it is in reality, I feel it does much more for me than any amount of stressful camouflaging and coping strategies.

Rather than focusing on what you can't do, do you mind if I ask what you feel you can do?

It's true that I do feel negative about it, especially as it seems to be an entrenched pattern across generations.  We could probably do with another thread entitled, "Why do other people behave in such a manner?" as there's so much there.  Goodness knows, it's a question that has been hurled at the heavens many times in my family. 

I suppose that, having recently been diagnosed with autism and on the verge of one of my my adult sons being diagnosed too, i am seeking to understand what has actually been happening within my family over the decades. 

This does all take place agains the heavy influence of cultural and societal factors and I can be active against these, in my own way and within my means and abilities. But I am also hoping to build in more awareness and know-how for the next generation, especially as regards keeping ourselves safe and, if at all possible, out of the malevolent clutches of the DWP.   This troubles me quite a lot.  It's also hard to do if my focus is on "What's wrong with you?", I can see that.  Maybe the focus should be on building and playing to our strengths whilst being very savvy about external influences that might change only gradually?

I don't know...   The prospect of poverty haunts me though.    And in terms of the balance of power, yes, it did feel very disempowering to be extremely poor throughout my formative years.  It added to the exclusion and isolation, the shame and despair, plus also deprived us of the wherewithal to do very much about it.  It was extremely damaging, I think.