Please Help Me... (Housing - benefits)

NAS18906 said:

I think I'm getting a better picture of how bad the social anxiety can be for some people. I always think of buses as very safe places - everyone normally tries to avoid saying anything to anyone. It was different when I was at school as bullies would pick on the younger kids and anyone who looked too studious or different but I haven't suffered this, or seen anyone being picked on on public transport, since then.

For some time I had to commute by bus from my mother's where I was sleeping to the city center daily. I experienced persons referencing my discomfort and mocking my coping mechanism (pretending to be busy on my phone). People would point out my deteriating body language and do impressions, all just half-audibly. On one occasion, at night while waiting for the bus, some persons engaged in the entertainments described above so agressively that I would have left but for the 10mile walk and the lack of any later buses. I became practically catatonic. This was pre-diagnosis for me, I have a different policy now. When the bus driver arrived, he made an excuse "exact change only, theres a shop open there" to get rid of them and drove off, in order I think to protect me from this behaviour. I am not ungrateful.

While its true as Recombinant says, that adults tend to go around ignoring each other; once they notice you they are just as capable of anti-social behaviour as the schoolyard bullys they once were...

I think I'm getting a better picture of how bad the social anxiety can be for some people. I always think of buses as very safe places - everyone normally tries to avoid saying anything to anyone. It was different when I was at school as bullies would pick on the younger kids and anyone who looked too studious or different but I haven't suffered this, or seen anyone being picked on on public transport, since then.

NAS18906 said:

Outraged, I think I remember you making some comments on a previous thread about how you decided to break out of your social anxiety hermit phase by deciding that it was about time to come out and play with the real world. Do you remember that or did I get it wrong? Have you any advice for Luke on dealing with his anxieties that are making his life hard to bear?

I dont want to treat the matter as if Luke needs to manage his condition better; his expressed anxieties are perfectly appropriate to his situation as the housing in the price range quoted is execrable with structual, electrical and plumming failures common and rampant anti-social behaviour. Used needles are present. Persons with ASVs are quickly targeted for bullying. It really isn't appropriate accomodation for pidgeons and rats let alone Luke. He needs to insist on housing from a "social housing provider" such as the council or a housing association, they do have specialist flats for persons with disabilities but they are hard to get. 

Further, while I have gone to efforts to avoid hermitage, my degree of sucess has been to now operate at a similar level to Luke (I'll walk some places, but won't take a bus) so I'm not really in a position to urge greater effort. I will however say that it is helpful to have a standing agreement with a local taxi service that the driver be briefed not to engage you in conversation/banter, though on ESA it is likely to be difficult to pay taxi fare everywhere. 

I'm also not sure that the methods I use to resist hermitage and avoid anxiety would be appropriate for someone living in a clergyman's household as they are directly oposed to the "turn the other cheek"/"be the better man"/"rise above the conflict" philosophy. But if your interested I took private martial arts instruction, chose to assume behvours like staring/snigering/whispering were malicious rather than ignorant, and go about in public prepared to refute insult and where necessary defend my person. I don't know by what telepethy NTs know who to bully but when you are not prepared to take abuse they studiously ignore you...or become violent hense the martial arts training. As I say, inappropriate while he lives with his family but probably necessary if he ends up in slumlord controled housing.    

Outraged, I think I remember you making some comments on a previous thread about how you decided to break out of your social anxiety hermit phase by deciding that it was about time to come out and play with the real world. Do you remember that or did I get it wrong? Have you any advice for Luke on dealing with his anxieties that are making his life hard to bear?

From my own experience, I definitely got to the point of thinking that I couldn't do anything right and that everything was hopeless and that it got the point where there was no point trying to do lots of things. It seems to me that Luke is in this state because he appears to look for confirmation that he should be in an anxious state (e.g. the Attwood quote above) rather than entertaining the idea that he may be able to climb out of the "heffalump trap" of anxiety. I think Tony is suggesting that it is common, which it is, but I don't think he suggests that you have to have anxiety to be a member of our club. To me, if you accept and understand the triad of problems but then don't accept any of the other comorbidity as absolutely inevitable and insurmountable then you can get to a place where you can put those comorbidities in their place. Some of the comorbidities need special attention so, for example, I use noise cancelling headphones to make life in an open plan office bearable. I have made a lot of use of the mp3 player in my phone so that I can choose what I listen to (I prefer to listen to BBC's Life Scientific or SInead O'Connor) rather than having to listen to the cacophony that attacks you in the street or on a bus. I choose to think of my ASD as an unruly dog (see this thread for details). The condition is "for life" and not just for xmas but it doesn't have to ruin your life.

Having been, and partially remain, in this position I feel compelled to warn that councils can behave unethically in this matter. They can and do lie to your face about entitlement (have every policy statement in writing) and are prepared to house you under general homelessness provision. This is intolerable as the habitual residents of such places will map your stressors and triggers faster than any diagnostics service and weaponise that knowledge.

On the up side, you almost certainly are entitled to full-rate housing benefit. Make an application supported by a copy of your diagnosis letter. Appeal if necessary. With this entitlement you'll probably still need to pay extra from your pocket to obtain minimally civilised housing. The big problem however is that landlords prefer not to rent "professional accomadation" to persons with ASVs or in recipt of benefits: work on your NT impression...

This kind of thing illustrates the problematic nature of people being tempted into overly optimistic responses to the pragmatic realities of the challenges that they encounter in life, to my mind at least.

This is one of the things that scares me, I have been making progress over the past few years, and would like to continue doing so - the accommodation I go into now will undoubtedly be a significant determining factor within this.

That is why I find it so unreasonable that the council apparently feels it is appropriate for a disabled individual whose disability primarily revolves around social interaction to be given no choice other than moving in to shared accommodation.

I know very few people with AS who do not live with some form of anxiety. AS and autism in general, by nature, result in stress and heightened states of alertness. Anxiety can be triggered by sensory intrusions, changes to routine, unpredictability, communication problems, having to perform and put on act in social situations. These anxieties are all part of having AS.  Some people with AS develop such severe anxiety that they are diagnosed with a secondary anxiety disorder, myself included.

Anxiety can be managed, if not cured, and it is possible to overcome some fears; but because the anxiety is such a part of AS for most people, it is unrealistic to think it will ever go away completely.

It is important to find appropriate accomodation, and do not shy away from being picky. I am still recovering 6 months down the line from inappropriate accomodation - noise intrusions and stress- and I am now even more sensitive to noise than I was before I had my first taste of independence.

It would be scary for the people on the outside of the flying fortress, not for me. :)

I'd know the inside layout and I'd be completely familiar with all of it and completely comfortable - flying around in the ol' fortressarooni.

I can appreciate anxiety is not an autistic trait par se, it is a general human ailment.

Still, unexpected or greatly intensified triggers seem to be quite common amongst those with an ASC, as I understand it.

Tony Attwood says that in his (very substantial) experience, there are very few people with Asperger Syndrome who don't simultaneously meet the criteria for full blown clinical anxiety.

I appreciate the 'pep-talk' thank you. :)

But it isn't that I feel that I 'fail' at getting the bus, I get the bus and get where I'm going to... almost always.

It is just being realistic about the state I will be in due to the resultant impact.

An hours journey would likely leave me feeling too agitated to sit and focus for - for example - 2 hours, on something such as study and so on.

Whereas I could do that if it was to somewhere within walking distance.

(all dependent upon the environment, and my level of familiarity with it, of course.)

Then, if I push myself, I just end lying on bed, shaking and sweating and grinding my teeth until the small hours of the morning, and feeling dreadful for several days afterwards.

If I had my own place, I suspect I might be able to manage this for a number of reasons, having more general independence is one example, but also specifically, the potential to get up and be active even in the small hours, which I feel like I can't do now for the sake of consideration in terms of intruding on my mum and step-dad, obviously sleeping at that time.

These are the kind of things I'm considering in terms of distinguishing appropriate and inappropriate accommodation.

There are issues beyond travelling on the bus involved with moving with my mum and step-dad.

Sorry, I've actually gotten really tired now!

I'm going to go to bed - I hope this post makes sense, I realise now I was writing it while falling asleep!

Later all. :)

A flying fortress would surely be far more scary and alien than an ordinary bus!

Your anxiety is a state of mind that you have obtained as a consequence of your ASD. It is not part of you or your ASD. i believe that you can tackle the anxiety and regain control of your life. This isn't easy and it won't happen overnight but it is possible.

if you regard every bus ride as an opportunity for failure then you will be able to find failure in every journey. If you regard it as an opportunity for success, but accept that some of the journeys are failures, then you could start accumulating successes that will encourage you to succeed again. It is ok to fail, everyone has some sort of failure every day. At the same time we all have little successes that we often ignore.

You have succeeded in getting a lot of information about the benefits system. You have succeeded in finding some accomodation that looks suitable. You have succeeded in making your question very clear in this thread. You have succeeded in your volunteering work at the community centre. Every day you are learning and building your knowledge.

i don't think you should just jump on a bus and grit your teeth and hope for the best. This would clearly be a project where you would have to work out ways and means of making it possible without ignoring your fears and reasons why it might be hard.

The ideal would perhaps be a flying fortress that could zoom through the skies, some kind of Bond-villainesque metal spider habitation far out in the middle of the ocean, or at the very least a mansion in the hills of Hollywood with its own multi-level pool.

I am not pinning a great deal of hope on any of these particular options. :)

Remaining with my family seems inappropriate for a number of reasons.

I have not found appropriate accommodation that I can feasibly afford on the shared rate of housing benefit - which would make sense, given that shared accommodation would be inappropriate.

I have found appropriate accommodation that I can feasibly afford on the single person accommodation of £80-90 week.

The frustration is that choice is out of my hands as I am being provided with conflicting information.

Further to this, if it is indeed correct that I am only eligible for the shared rate, that would be entirely inappropriate to my mind.

I consistently struggle with public transport. I am no longer convinced that the 'recovery' model is an appropriate model.

While my general disposition and circumstances will affect my resultant level of ability, I am dubious that using public transport is something that will get easier to me through 'practice'.

It makes sense from one perspective in that every bus ride is essentially unique, with different people in different places and so-on.

If the council feels that selecting from a number of inappropriate options is reasonable, my personal feelings would be that the council themselves are being unreasonable.

Still, this does nothing to quell my anxiety about the situation - people constantly do unreasonable things - and I am not even certain that what the disability advice organisation was referring to WAS the discretionary housing payments anyway.

Hence, while it might appear I have choices, in fact, my anxiety results from my lack of a firm base of sound knowledge to make these choices from, together with the sense of being provided with conflicting information from different sources.

I think it is good that you have some choices. You can choose between accepting non-ideal accomodation and the fall back option of staying with your family.

You can choose between writing to your MP and accepting, and dealing with, a non-ideal situation.

You can choose between accepting the challenge of managing on public transport and staying local. 

I think you could master public transport and you could then regard that as a positive step in overcoming some of your fears. If you treat it as a challenge and an opportunity to achieve something then this could be good for you.

i suspect that the council might not feel too compelled to give you a discretionary allowance if you have some reasonable options.

Yes, my family are completely supportive, and yes, I will be able to move with them.

It is just that it really isn't appropriate accommodation and it kind of just delays the inevitable in terms of me having to move out.

It's also the case that one of the top priorities in my care plan is to stay local to where I am.

I don't drive and I have doctors, dentists, pharmacy, community centre that I volunteer and so-on all in walking distance.

Where my mum and step-dad are moving isn't the other side of the country or anything, but it certainly isn't walking distance.

It would probably be at least two bus rides for example.

(I also struggle on buses too)

MP is a good idea... I don't know if that will be a short-term solution though, or more of a long-term remedy... I might well consider that though.

Thank you again.

that sounds very tough. Is there any way you could live with your parents in their new house for a month or two whilst you find appropriate housing? Are your family being supportive at this time?

could you do something like write to your mp about the conflicting messages you are receiving about these matters? Just an idea.

try to be gentle on yourself. It seems like you are trying really hard to be proactive and mature. You should be proud of yourself :)

Thank you for the replay Socks.

Yes I am very stressed out about it indeed.

I can't stand not knowing where I will be in a matter of weeks.

We've all started the actual physical process of sorting and packing, but even that is difficult for me as I am dreadful hoarder, so how much I can force myself to let go of means knowing where I'm going to be... on top of issues of planning out the upcoming weeks, months and years ahead, in light of my new surroundings and location.

I can't think about what my life will be like.

Thank you again for the reply.

I'm sorry but I don't know anything that will help you about housing benefits.

I can see that this is stressing you out and I am sorry about that. If you want to discuss general strategies and techniques for reducing that stress then perhaps you could start a thread for that?

To reiterate my main issue as succinctly as possible:

I am dependent on housing benefits.

The council are telling me that I can only receive the shared rate of housing benefits.

My social worker agrees that shared housing is not appropriate.

I have been informed from other sources that I should be eligible - as a disabled individual - to have housing benefit that will potentially pay for the entirety of my rent, where this would be judged as reasonable according to considering the average rent of comparable properties in that particular area.

I am posting here partly because I want to know why have I been told this? What was being referred to?

I can appreciate the council might not like advertising such a scheme openly, but when the person on the helpline flatly denies the possibility of any such thing, what am I supposed to do?

Move into inappropriate accommodation until I become ill (by which I mean suffer from stress induced psychosis) in order to prove that I deserve higher funding?

Sorry if perhaps I'm being patronising in an attempt to get my point across.

I live with my mum and step-dad in a large semi-detached. I guess you'd say it was a 5-bedroom house?

I've been being treated for debilitating acute stress, anxiety, depression and chronic insomnia for 8 years now.

I can't imagine what moving into a much smaller property shared with random strangers - as opposed to family members who also provide appropriate care - might do to my health.

My brother did try to take his own life when put in a comparable situation.

The option of moving in with friends seems a vague possibility, although I hardly have any, and like I mentioned, I need to find a place within weeks.

I'm not sure what more I could be doing in terms of my freedom as an adult, I've researched properties, arranged vieweings, worked with the social worker and charity to put together a transition plan and a care plan for when I am in my new property.

My work on this area has been intensive for the past few weeks - ever since finally being informed that the housing agency mentioned will not have appropriate accommodation available.

This has been hampered by the fact of not knowing how much benefits I will receive.

I'm too ill to work, and like I say, the ONLY place that I have found which I can afford on generic housing benefits - which don't take autism into consideration whatsoever was a one-room studio apartment directly above a fast-food outlet directly on the main road between two major cities.

That seems far from ideal given the issue of noise, but what really put me off was that the landlord turned up to the viewing, called me to his car over the street and spoke to me for about 5 or 10 minutes through the wound-down window.

While I was standing in the street, prompted by the fact of my mentioning I have a support worker, he made open enquiries about my mental health and if I might be a problem for the other tenants in the property.

He did all this in spite of having neglected to bring the key so that we could actually view the property in the first place, for some reason.

I don't mean to sound as though perhaps I have some picky autistic tendencies but to my mind his intrusive lack of professionalism was disconcerting, considering I might be moving in to a property he owns for a substantial number of years.

I have found dozens of places that are in the £80+ rental range - it's quite striking to see actually, how it would appear that only properties with a distinct reason for doing so drop beneath that: hardly places that are likely to be autism appropriate.

Perhaps I haven't made my specific concern clear enough - my issue is benefits, specifically how to receive these, and how much can be expected.

My parents aren't doing anything on my behalf in particular, and my social worker has provided information about council related disability accomodation schemes but left everything else up to me.

Do you have any experience with the housing benefits system you can share?

If you have any specific ideas for how to exercise my freedoms as an adult in a more appropriate fashion, please just suggest them, and I'll try and take them on-board.

Just to clarify, I have lived away from the parental home for 6 years previously, while studying and for a couple of years afterwards - although I have never actually lived alone.

What alternatives do you think you have? Have you thought about sharing a flat with a friend?

One of the things that is happening here is that you are being given some freedom as an adult to work things out for yourself. If you would prefer to have a larger, more convenient home then you may have to work harder to obtain this. You may have to make some compromises about what you want and what you can afford and tolerate.

People will sometimes be reluctant to give straight answers and this is an area where an aspie can struggle, we expect a very straight black and white answer to questions. Often, people will say nice things to get you to leave them alone and they won't tell you the honest truth that we expect.

This may cause some anxiety but you might be able to grasp your new liberty as an adult as an opportunity to make your own choices rather than relying on your parents or social workers to do weverything for you. This can be liberating even if it is scary at times.

Does this help? I don't want to stress you out and I do want to assure you that this is a forum where you are among friends who have real experience. I hope that we can help you as you come to grips with being a more independent grown up.

:-)