Tag Archives: impact

How Sensory Overload Impacts on Autistic People Part One – The Impact on my Mind.

It has been quite a while since I wrote a blog, and now that I am writing one it is about something that happened at the end of last month. Now part of that might be due to the fact that this month is December, and as I am sure most of you will know this can be a hard month for autistic people. It is all change, and routine and normal life can go somewhat out of the window. But we are still only in early December, and the bulk of why I have not been writing much, if anything, this month is to do with the events of November. The best thing for me to do is to explain what I did in November, and why that is still impacting on me now.

In November I went to three autism events. Twice as a speaker, and once just to man a stall selling copies of my new book. Now I should say before I go on that I enjoyed all three events, and was happy to go to them. Nothing in this blog is meant to be a comment on those events themselves. But it is worth looking at why I, and other autistic people, can find events like these so hard. And some of the particular after-effects that I have had to deal with.

 

  • Build up: I don’t feel nervous or worried about the events beforehand, or at least not that I am aware of. But I know the feelings must be there somewhere. I find it hard to focus on doing work or even doing something relaxing like watching a film if I know I am going to have to go to a busy event in the next few days. Even though I might not be aware of this build-up of stress and anxiety, it can take its toll.
  • Overload: Events such as the ones I went to, full of stalls and guest speakers, tend to draw quite a lot of people in. They are noisy, full of people moving around, and all in all very difficult places to spend much time in if you have sensory issues. Perhaps I must take my share of the blame for not going outside and having a break from time to time, but once I get started on something I find hard I like to just get it all done. If I take a break to go somewhere quiet there is a high risk that I might not be able to go back in, and get on with the work I need to do. So I end up spending anywhere from two to five hours in a busy, noisy, and overwhelming environment. Again this leads to a build-up of stress and anxiety.
  • One-on-one talking: When I am at an event, be it on a stall for ASK-PERGERS? or doing a talk, I end up with people chatting to me. Now this is a good thing: it gives me a chance to sell my book, and also to make contacts. Plus the whole point of what we do is to help other autistic people, or their families by giving advice, so a chance to talk is good. But it does take it out of me. It’s fair to say that in a normal month I might chat one-on-one with five people at most. Now this is partly due to me not being at university at the moment, and if I were it might be more. But five is about average for this year. But at an event like this I might talk one-on-one to fifteen people in the space of a few hours. If I do two or three events in a month it might be something like fifty people over the space of those events. All that one-on-one talking wears me out, and pushes me more and more in to overload.
  • Not much time to recover: If I do a few events in a month then I don’t have any real time to come down from one before I have to start planning for the next. It might take me a week or more to fully get back to normal after something like this, but of course I do not have that time if I have more events to go to.

So what does this all mean? Well it leads to a build-up of stress and anxiety that can only truly come out when I am done with all the events I have planned. Not that it does not affect me in-between events. It does. Last month I was so overloaded that I found it hard to do anything other than the events I went to. When I talk about that a lot of non-autistic people nod their head and say something like “Oh yes I will need to crash out for a bit too.” Or “I get tired as well.” They do not, nor could they fully understand what an overload is. If your lap top overheats and shuts down because it cannot cope with the overload to its system it can’t do anything. It just crashes and goes blank. And I find it to be very much the same for myself. If I am overloaded I can’t do anything, not even things that relax me. I can’t pick which film to watch, and in fact I don’t even want to watch anything. I can’t sit and read, or do anything else fun that might relax me. I spend most of the day just walking from room to room not knowing what to do, and doing nothing. It’s not a case of going “I am tired now, better just watch some TV then I will feel fine.” I might be unable to do anything, and I do mean anything, for days, or if it’s really bad even weeks. The truth is November was such a comparatively busy month for me that it took me quite a long time to come back from the overload. It’s really only this past week that I have been able to start doing things of any real worth, and like I say this is the first writing I have done this month.

I do want to do more work, and my hope is as I do it I will become more used to it, but also work out ways to minimize the impact of the overload. But I wanted to take the time to try and explain to you how even though I might be more than able to stand up on a stage for twenty minutes and do a talk, or man a stall for five hours, the unseen impact of this can last for days, or even weeks.

I also wanted to take the time to write about the physical impact the build-up of anxiety can have, but I feel that should be a full blog on its own. So that should be out later this week, or early next week.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Anxiety & Stress, and the physical impact they can have.

We all know by now that autism and anxiety come hand-in-hand.  Anxiety can be provoked by even the smallest of things because to autistic people these things are not small.  It might be knowing that you have to go out, or worrying because your routine has been changing. But what kind of impact can this high level of anxiety, day to day, have on your physical health?  Well I can’t talk for everyone, but I can tell you the impact it has had on me over the last few years. First off I need to point out that with starting university, and some serious family issues my stress levels have been higher in the last two years than they ever have been before.

Normal physical reactions: What do I mean by normal? Well it`s common to feel some level of physical reaction when you have anxiety.  For example if I know I have to go out at eight at night then from around five I will start feeling cold inside, have pains in my guts and maybe even get a headache. I am more than used to this by now as I have had it all my life. When I used to have to go to school (I was home educated after age seven) I would feel sick all night and all morning before I got there.

That might be the case for everyone autistic or not, but being autistic I feel anxiety more than most. In fact anxiety affects me daily, as it does a lot of autistic people. But what about at times of high stress and anxiety? How severely can anxiety impact on my physical health?

Loss of sight: A little over a year ago, as I was coming to the end of my first year at university, I woke up one morning and tried to walk to the bathroom. As I walked across the landing I could feel myself growing weaker to the point where, when I got in to the bathroom, I had to lean up on the wall to stop myself falling to the floor. As this was happing my vision was also fading to be replaced by blackness. For a good few minutes I could only lean there dripping in sweat and unsure if I was throwing up or not due to the fact that I could not see a thing. This lasted for approximately five minutes, and once it had passed I of course went to A&E. and the doctors there said it was caused through stress and anxiety. Now I did end up getting very ill with an infection around the same time. But the view of most of the people I talked to was that this would not have brought on the loss of sight, but high stress might have. Having talked to someone who used to lose their sight quite a bit due to stress as a teenager I do think that stress/anxiety had a large role to play.

Chest pain: A few days ago, and around a year after the loss of sight, I woke up and got out of bed again only this time instead of my eyes it was my chest that was the issue. I had sharp pains around where my heart is, and when I sat up on the side of my bed they only got worse. I dressed, but when I bent down to tie my shoes I found I could not due to the pain that it caused me. This lasted for a while, and then only returned twice that day, with one-off sharp pains. All in all I had pains like that for four straight days. So how do I know it had anything to do with anxiety and stress? Well I did go to the Dr and was told it might be stress, or something to do with my muscles. But I think it was stress. I have had pains like that before you see, but only once or twice. The first time I got one I was in the middle of a meltdown, shouting and highly stressed. I had two sharp pains in my chest. Over the past week or so there have been a lot of meltdowns, and a lot of stress. I don’t see it as any coincidence that the pain came back worse than ever during those four days when I was extremely anxious and stressed.

When you live with high levels of anxiety and stress almost every day of your life you are bound to be impacted by it in some physical way. The human body can’t take that level of worry without reacting somehow, even just as a warning to you that you need to change something. After the pain in my chest I decided to take a short break, and then come back with a new plan, and routine to try and make my days less stressful.

Have any of you had your anxiety/stress impact on your physical health?  If so what have you done, if anything, minimise the chances of it happening again.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

 

The impact that visiting hospitals can have on autistic people.

Most people with autism will have to visit hospitals at one time or another just like anyone else. This is not about having to stay over night, but just about visiting for a few hours, be that due to going to A & E, or an out-patient appointment, or for the main part visiting someone else.  The emotional impact can of course be huge, but mainly I want to use this blog to talk about the hospital itself, and why just being there can be overwhelming, and stress-inducing for autistic people.

 

(1) Noise: Let`s get this one out of the way first. Hospitals are noisy places. They are full of people banging about, moving trolleys, shouting to each orther, crying, all talking at once and just generally making a racket.  Most of this noise can’t be helped, but that does not make it any easier to deal with.  Right from walking in the doors it is noisy, even if not especially on the wards. If you`re visiting someone then what time is it?  Well visiting time, which means everyone else in crammed in to that room or ward at the same time as you.  Young kids screams to adults who can’t seem to stay of their phones.  There is a bit of everything in hospital wards.

(2) Emotions: This one might be a bit harder to explain, but let me try. When I walk in to a hospital I can almost sense the emotions all around me. The staff have heightened levels of stress, there is grief and fear everywhere.  Of course there are good emotions too, but they all blend it to one.  It`s like walking up a mountain; you start off at the foot – AKA the car park – where things are normal, and the higher up you get the lighter the air. The harder it gets to breath. Only the farther you go in to the bowels of the hospital the more the air is tinged with strong emotions and feelings. It clogs up the atmosphere and makes it heavy and oppressing.  For someone who finds emotions hard at the best of times it can be like walking out under the boiling sun.  Yes I can do it, but being in such a harsh atmosphere takes a huge toll on me mentally, and physically.

(3) Smells: We all know this and everyone says it – hospitals smell funny.  Of course they do if you think about it, they are full of people being sick, going to the toilet where they are not meant to, bleeding, and well, dying.  They have to do something to cover up those smells so they seem to just blanket the whole place in cleaning fluid.  I don’t blame them, but as you all know that hardly smells nice!  For people with sensory issues though it can smell far worse.

(4) Change:  I wanted mainly to look at how things are inside the hospital, but of course visiting a person in hospital is going to mean a change of routine for most autisitc people.  But even when you get used to someone being in hospital there is still a  lot of change – you might go and visit only to find someone has been moved to a different room or ward.  This might happen more than once, meaning you can’t really get to grips with where you are in the building even if you go each day.

(5) Autism is not the main issue: What I mean by this is that when you go to a hospital to visit someone, or because you need to go in to A&E, your autism is not going to be the first thing on peoples` minds. If you are visiting then the staff working there might not even know you are autistic, and your family might have a lot on their minds, and not be able to notice if you are becoming overloaded. You might go yourself and plan to not stay long, but get caught up in something going on and have to stay a lot longer.  And the time you are there your autism is not going to be the first thing that other people are thinking about. You might not be getting the help and support you need as there are others there who are, rightly so, the focus.

 

These are five reasons why I think hospitals can be overwhelming, and difficult places to visit if you are autistic. That’s not even getting in to how hard it can be to have to stay in hospitals for any length of time. I for one take days to recover just from going to visit someone once. This can make it very hard to have a sick relative. I find myself torn between wanting to go and visit, and knowing the impact it will have for days.  And not just on me, but on those around me affected by my mood and the way I act, for example my increase in meltdowns.

 

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

 

The Long-Term Impact of people with Autism being detained in Hospitals

I am sure anybody reading this will be aware of the various stories about people with autism being taken away from their families, and forced in to hospitals.  But just in case you are not, I will briefly refresh the situation.  Across the country various young people with autism have been placed in the care of hospitals and ATU`s.  This is often against the wishes of themselves, and their families.  The institutions that they have been placed in are not specifically designed to support people with autism, and often very vulnerable people are being placed among those with significant mental health issues, and drug and alcohol addictions, and this is clearly not an appropriate environment for someone who isn`t facing these issues. There seems to be no upper-limit on how long people with autism can be kept in these institutions.  The families are often turned away when they attempt to visit, and visiting in itself is difficult as most of these places are located many miles from the families’ homes.

I suppose what I wanted to talk about in this blog isn’t so much the moral issues, as they have been discussed many times, and it is fairly obvious that it is not right to take people with autism away from their families, and keep them for an extended period of time in an inadequate facility.  What I am really talking about is some of the actual practical effects this could have on the person. This is based on being somebody with autism myself, and imagining the impact that something like this would have on me.

First of all let`s look at why these people are being detained in the first place.: there doesn’t seem to be any one particular reason for admitting them in to hospital; some people are asked to voluntarily stay there for one night, and find themselves still locked up months later.  Some are meant to be there for a few weeks, but are then not allowed to leave – despite their families knowing it is the wrong place for them.  Others are in places that are close to home, and then suddenly taken away to other places, hundreds of miles away, that are not equipped at all.  In reality it all seems fairly murky.  There should be no reason for forcibly taking somebody with autism to any kind of institution, so of course the excuses and reasons will seem flimsy.  Whatever people may try to tell you, autism is not a mental health condition.  Now at this point I feel that I do need to point out that sectioning somebody who has a mental health issue under the mental health act is different – it might not particularly be easy or nice, but sometimes it has to be done if someone is a danger to themselves or others.  But the key point of sectioning someone is that it should be done to ensure the person gets the best support, and care that they can – mental health professionals are supposed to come and check where somebody who has been sectioned is staying, and if their treatment is right for them.  Now people with autism shouldn’t be sectioned under the mental health act as they don’t have a mental health issue.  But even if the person with autism does have a mental health issue that is separate to their autism, the way they are being treated is still wrong.  Parents might have agreed for their children to go to an ATU for example, just for a few weeks so that they can be assessed, and ultimately helped. Consent for assessment and treatment should in no way imply that what has been happening to families up and down the country is ok.

The idea here appears to be a basic level of misunderstanding, and ignorance around autism; somebody is autistic so they are having meltdowns, so they are detained and sent to hospital or ATU – often hundreds miles from home.  They have their time outdoors, and their contact with their families restricted – in a way akin to somebody in prison.  They don’t know when, or if they will ever get out. So let`s do a list: here we have uncertainty, change (routine, location, people, environment) we have sensory issues: sights, sounds smells, we don’t have any of the things that may comfort, or calm a person i.e., particular possessions, or contact with family members and friends.  I think this would provoke a pretty negative reaction in most neuro-typical people, but in autistic people – well I know I would be bound to have some pretty serious meltdowns if I was in this situation.

There seems to be a principle that the more negative aspects of autism can be treated or cured if the person with autism is kept in a medical facility for long enough – this is nonsense.  As myself, and my family can attest to, the only way to help minimise the impact of outbursts and meltdowns is by a lot of hard work being done at home  If you add in all of these other elements you are never going to solve the problem.  There is a huge difference between a specific respite care centre for people with autism, that is fully staffed with competent highly-trained professionals, and allows visiting and freedom of movement for the autistic person, and somewhere hundreds of miles from home that is set up to deal with individuals with complex mental health issues.  It appears that people are trying to treat autism with methods used for completely different issues.  A good way of thinking of this is to imagine yourself turning up to A&E with a broken leg, and finding your arm being put in plaster – when you ask why you are told that the doctors knows best, and you just have to stick with it.  As time goes on your arm is still restricted, and you can feel your leg becoming ever more painful.  You are told that you can have the plaster off your arm as soon as your leg heals.  Because that is a physical example it is much easier for people to understand.  The concept, when it is translated to something inside the mind becomes much more complex for people – simply because they cannot see it.  But for anyone who has any concept of autism, what is happening to these individuals is no less ridiculous or frustrating.

We have established that there are absolutely no benefits to people with autism being locked in ATU`s and Hospitals – often many miles from home – and that this is a very strange, and unpleasant situation.  But if there won’t be any lasting benefits, will there be any long-term effects at all?  Well, there may well be.  Again these are just thoughts from my own head, and I don’t want to imply that these are things that will happen to everybody that is in this situation.  I am again just using the way my own mind works as somebody with autism, and tying to imagine the effects that something like this would have on me.

I know first-hand, again from my own personal experience, and from talking to a lot of other autistic people, that one big change to routine, or one particularly busy social event can have implications that can be on-going for months.  It can cause feelings of sensory overload, which can lead to depression, or severe outbursts, or even physical illness.  And that can be, as I say, from only one event, or particular change.  If we are talking about somebody spending months, or even longer, experiencing these thoughts, feelings and emotional overloads daily, then the idea of how long the after effects could remain is incredibly daunting.  I don’t want to be pessimistic, but the impact of something like this wouldn’t be over quickly for anybody – least of all somebody with autism.

There is also the worry that even though the autistic individual might not have any mental health issues when they are admitted to these places, an experience like this could easily bring on conditions such as depression and anxiety.  These are unfortunately common in autistic people, and are likely to be triggered by their experience.  They might not be present at all before somebody is admitted to one of these places, but they could well become apparent once they have been they are released.

Another unfortunate consequence is the damage that being detained can do to the work that has already been done to help the autistic person.  I know myself – again from experience – that it can take a life-time to build-up certain skills.  The impact that being locked up for so long can have on social and communication, and independence cannot be underestimated.  I can`t say for sure that this will happen in every case, but it does certainly have the potential to knock the skills somebody has developed right back to basics.  So not only it is a completely ineffective treatment, it could also destroy everything the individual and the family have worked for, and achieved.

All of the above hasn’t even taken in to account what the various drugs forced on these individuals could do to them.  The commonly accepted facts about drugs prescribed to people with mental health issues is that they generally would cause some kind of side effect – but that this may be worth it for the positive effects.  The problem here though is that because people with autism don`t actually need these drugs, they don’t get any positives from taking them, and are simply left with the after-effects – whatever they may be.

These are just a few thoughts that I have had as a person with autism, reading about these families.  I am sure there are a lot of other issues that people who are more directly involved in them can bring up.  I understand that at times some of the people who work in these places, and perhaps even the people who arrange for the autistic person to be taken in, might think that they have that persons best interests at heart – as hard as this may be to believe – but good intentions don`t meant anything unless they are backed-up by good and positive actions.  And in this case, actions are definitely speaking louder than words.  Whatever is happening, whatever the justification for it, it is wrong – plain and simple.  The sooner not only the professionals, but the general public wake up and see this, the better.

My new book:  http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/  

Links to families who have been affected by this issue, and campaigns that have emerged because of it:

https://www.facebook.com/JusticeforLB?fref=pb&hc_location=profile_browser

And the LB BILL

http://lbbill.wordpress.com/2014/11/04/lbbill-draft-one-launched/

http://michelledaly.blogspot.co.uk/2014/11/warrior-mum-nina-nis-journey_22.html

And the petition

https://www.change.org/p/nicola-sturgeon-bring-my-autistic-son-tianze-back-home-to-scotland

http://michelledaly.blogspot.co.uk/2014/06/warrior-mum-leos-journey.html

And the petition

https://www.change.org/p/nhs-islington-bring-my-son-stephen-home-care-for-him-in-our-community-bringstephenhome

https://www.change.org/p/wigan-mbc-adult-social-services-and-calderstones-nhs-don-t-send-my-21-year-old-autistic-son-to-another-secure-hospital-assess-him-using-top-experts-we-can-recommend-to-have-support-to-live-in-the-community-and-flourish-as-a-human-being

https://mail.ntlworld.com/mail/u/0/#inbox/1499c361075e8da4

http://justicefornico.org/ (not specifically autism, but still relevant)

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762