Autism v TBI symptoms and treatment

I have been pondering for sometime the similarities between us (head injury sufferers) and people with Autism.

Many of us dislike change, having things moved out of place, crave routine, get easily distracted and have difficulty with emotions and dealing with people even close friends and family. These broadly overlap symptoms and behaviour of people with Autistic spectrum.

The interesting thing is when looking at treatment, therapies and especially support for Autistic spectrum there is much more available than for head injury.

Anyone have any thoughts or experience of going down this route ?

PS

I am not suggesting that we may now be autistic or autistic people be labelled as anything else.

27 Replies

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  • will try and reply at some point (sorry got loads on,& the flippin brain fatigue) yeah ive seen some overlap, i had a brain injury and my boys autistic.

  • May I add another possible overlap insofar as I really need complete clarity of communication.

    Short sentences and i have a strong tendency to take things literally... So much so that I asked a specialist if I had become autistic. The answer was NO. It's possibly one or several of our shared strategies to cope.

    I will be really interested to see what others say about this and thanks for raising it.

    Lovenhugs

    Xoxo

  • I think the key difference is the reasons behind these characteristics. For example, those on the spectrum tend to, as you say, have trouble with dealing with friends and family.

    Those with autism show a complete lack of interest in making friends, with a particular feature of an inability to understand the intentions or emotions of others and their universal indifference to what others are doing.

    For anyone who struggles with this after brain injury, the reasons might be completely different. With me it's not that I don't want to go out and see and meet people, it's that I struggle to be around groups of people because my brain can't process the volume of information.

    The reason for the struggle with relationships in those with Autism is there is a failure to develop an ability to understand other people's point of view, and for those with BI (for me anyway) is the inability to keep up with conversations. Same outcome, different reasons.

    That's my take anyway :)

  • Re. Autism it's really not like that with the boy in my care . I would swear that he was brain injured at birth also reading about how he was assessed physically growing up

  • Ah fair enough, that's just the stuff I know from my course. You probably know way more than me about it from being around it :)

  • i can see how what you say is right about people but not for all of the time. Take it easy. Long time since I read the literature..

  • Yeah for sure. I'm not even that well versed on that part of my course to be honest... (let's hope not, my exam is is 4 days!)

  • No you will be well versed on it. It's right what you say. Re t b i also, that was well put about volume. All the best with your exam. Get as much rest as you can if poss. I know you'll get there. Got to go, tea is up for ppl. Take it easy

  • My son has ASD. He is 17. He has friends he has a limited social life. He has meltdowns when things get too much. He doesn't always 'get' language, he is very smart. I work with another child who also has asd he wants everything his way on his term straight away and will not deviate. He has a very short attention span and flits from activity to activity. He can't sit and doesn't communicate much at all. Another child I work with doesn't have much speech and get violent and frustrated because of this, he is a sweet boy though.

    I think we can see different similarities from all of these children.

    It helps me to work with them, I have an understanding of saying what you mean, doing what you say and signing what I say to help with communication barriers.

    My problem is timing. I have no sense of time and they have a strong sense of time, so they are helping me too.

    It is kind of stressful but I love it.

    I suppose we all have an injury to the brain, wether by chemical or mechanical or bleed or pressure. It's how we handle it that counts.

  • Hi

    Have wondered about this and discussed this with my wife...oh by the way she works with autistic and challenging behaviour clients ( THINK THATS THE BEST WAY OF PUTTING IT)

    Anyway she has always said that everyone is autistic to a degree naturally. Its the extent and its impact on life thats the key.

    Also she has noticed the simularities with me and an autistic person. She agrees that its the amount of traits and how we developed them that is the main differance.

    She has also tried to "manage" my condition along the lines of autism to see if I would benefit. She has conculed that I respond differently and finds that this is a significant differance.

    How and what she did I cannot remember but as it wss not successful does not seem to matter.

    She then reminded me that bi people have memory problems which could be likened to dementia or alzheimers but that does not mean we have either.

    So maybe thats it we SHARE simular traits but are not the same. Some treatments may work for both but we must not mix up or confuse which is which.

    As more is known about bi maybe more treatments will become more open to us. Until then all we can do is let people out there know about bi and its impacts.

    I think I'll put Dr Paxo away now.

    .

  • Hi Sospan,

    In my case, I dislike change because change = having to learn/memorize new things.

    Routine is comfortable, no surprises to have to think around.

    Having things moved out of place makes them hard to find and easily distracted.....Oh, look a butterfly..... is typical of my inability to concentrate or block out diversions without losing my train of thought !

    I am lucky in that I can still relate to other people although being naturally quite shy I still have some problems in a social setting with strangers.

    My nephew has Asperger's and has difficulty relating current behaviour with detrimental consequences in the future. He is a type 1 diabetic and does not control his diet/blood sugar properly. It is a worry. x

  • As a PWME (person with ME) I have been struck by the similarities between the symptoms and challenges I experience as a result of my (still very little understood) condition and those of you here with ABI/TBI. In fact I mentioned that very fact to my neuropysch the other day and asked whether anyone was researching it, as they seem to be giving the limited research money to people who are interested in old people, possibly because ME makes you feel (and behave!) like you are 90....😄

    I have also been struck by the similarities I have found with friends with MS. It is that combination of fatigue and an abnormal response to exertion, of limbs not wanting to work properly (although that is my ME-'plus' bit, diagnosed as FND) of cognitive and executive dysfunction - the inability to retain information or process it in a logical and meaningful way.

    I think what we are picking up on is that an assault on the brain is different from an assault on the rest of the body. Those are the elements we share that others don't always 'get', because any major trauma to the rest of the body tends to be more limited in its impact, whereas brain trauma seems to have this multi-systemic effect - and in the long term.

    So when we talk to others who have had, say major heart surgery, whilst they might recall feeling absolutely whacked out immediately after, feeling frustrated by their inability to complete basic tasks soon after, remember being more easily tired to start with, talk to them a year or so down the line and it will all be a distant memory, they may even be running marathons for the BHF, bless 'em.

    Those of us in the (or soon to be in the 😮) surgery-in-the-brain club face these impacts on a continuing basis. We develop individual strategies to cope, and I have found myself taking ideas over the last 5 years (anniversary yesterday) from across the neurological spectrum, on the basis that if it works for me, I want it...Seems to be the way to do it!

  • Thanks, this is around what I was pondering.

    Apart from Headway branches there are no real head injury for 50 miles. However, there many services available for other conditions that may offer suitable treatment but people can't access them because they haven't been classified in that category

  • A very interesting concept. I work with young people, some of whom have Autistic Spectrum Conditions. I also come across adults who behave in 'Autistic' ways from time to time. My personal experience was that my Brain Injury triggered my 'shutdown' response, which could, from the outside, appear similar to the emotional detachment seen in some people with Autism.

    Looking back on it, 'shutdown' is always my first response to any type of crisis, my animalistic fight/flight/freeze response HAS TO be over-ridden by higher order thinking, and I've trained myself to always 'step back', and analyse. Work think I'm some sort of freak, because, in the midst of any type of crisis, I'm calm, almost detached. (A few weeks back I was holding the head of a boy with a suspected cervical spinal fracture, while the paramedics collared him, and maintained a calm, composed conversation with his Mum, who was going to pieces at the side of me.) The re-trained brain is either a blessing, or a bitch, depending on whether it analyses a situation as "He's only doing that because he's always done that, he's not TRYING to annoy you." or "Could this headache be another haemorrhage?"

    Having worked with a child with a TBI many years ago, I already had the bag of strategies specific to Brain Injury, to work alongside the bag of strategies I've developed through the years to deal with Autistic 'meltdowns', and Panic Attacks, where the person's brain defaults to first-instinct. First-instinct is almost always self-preservation, and I can see similarities between some of my behaviours, when faced with 'overload', and the behaviours of an Autistic person in 'meltdown' phase. I can draw similarities between the sheer 'overload' experienced by an injured brain, and the inability to cope with externally-seeming innocuous stimulus in an Autistic person. I don't screech, or wail, or bite myself, but I do leave the room if the husband has too many sources of noise blaring out at once, it's over-riding the first-impulse to kick the plate out of his hand when he's sitting on the sofa, watching TV and YouTube, making noises like a chimp eating super-noodles, that's the hard part.

    My detach-analyse default is part of my PTSD, I know that most situations won't harm me, so, when that initial 'panic' response happens, I draw into myself, to assess the level of risk, the likelihood of harm, and the possible alternatives for action. It's a fortunate outcome of some deeply unfortunate life-experiences. From the outside, it could seem like a deeply disturbing shut-down, and I know I sometimes inadvertently upset colleagues with it, seeming so calm, so linear, so procedural, when faced with things that they find deeply unsettling. I find them unsettling, too, but, in that moment, I have to be calm. To draw another analogy, we had one boy who had some incredibly disturbing behaviours, and had caused significant harm to himself, and others. He had broken bones, in himself, and others, and it would routinely take at least four of us to move him to a place of safety, to prevent him causing further harm, or distress to others. During his crises, this boy would 'shutdown', and other staff found that terrifying, that he would look 'through' them, and be entirely verbally unresponsive. Faced with that, with a boy who was entirely shut-down, and who often needed three or four grown men to move his resistant, thrashing body off a corridor, faced with some less-experienced staff, who would shriek, cry, or generally get in our way, while we tried to move him, I would detach. Nothing on the corridor except this poor, distressed human and I.

    The rest of the team adapted to me, I was strong, but not strong enough to move him by myself once he reached the resistance-stage, and my bigger, stronger (differently stronger) male colleagues eventually learned not to try to push me out of the way when I put myself in the thrash-zone. I'm touch-averse, and everyone I work with knows it, and that's another way in which I'm 'a bit autistic'.

    What I did in those situations, was pretty much what I do in all situations involving panic, or emotional crisis. The words would change, depending on the child, but the tone would remain the same, calm, caring, concerned, but not condescending. "I'm still here, my love, this will pass, it always does, I'll still be here, and you're going to be OK." That child responded to my voice, most of them do, and, if my voice doesn't work, we swap out for another one. Calm, low-and-slow, no panic-pitch, even though I was generally well within the 'arc of danger', I've had some pretty horrific injuries from children in crisis, but bruises fade, the panic of feeling that you're alone, in this horrible place, and nobody cares takes longer to fade than a bruise.

    I have rambled off-topic, I apologise, I was attempting to contextualise the similarities between Autistic meltdowns, out-of-control panic attacks, and the first-impulse response of an injured brain. If you have an injured brain, I find that breathing helps, in those crisis moments, to know that the next breath will come, to pull it in, and know that the oxygen will help the blood to dissipate the unhelpful adrenalin, even if that's not actually how it works. If you're observing the crisis-behaviour of an injured brain, keep yourself safe, and keep yourself calm, an irrational-anger response to irrational anger only feeds the situation, please try to 'step back'.

    I haven't had the craving for order, routine, or lists, that the rehab-lady wanted to counteract with timetables, and worksheets, and highlighter pens, but I've never been much of a one for lists, it's the school summer holiday, I only know what day it is because it's dustbin-day, I'm wearing odd socks, and that's absolutely fine, because that's my 'normal'.

    Apologies again that it's a long one, (she says, adding more words.) and that I have, as I tend to do, entirely circumnavigated the point I intended to make. We're all very different, and, if you look hard enough at anyone, you can find 'Autistic' traits. My waffly point is that the brain is a complex thing, that we're all on a spectrum, a continuum of emotional wellbeing, good days and bad. We need to be treated as humans, even when we're behaving like animals.

  • Admire you patience and fortitude. Patience is once is one of the things i really miss since my injury.

  • Ah, I'm an impetuous loon underneath, I misbehave far more than most of the children do, it keeps my colleagues awake. I can 'switch', though, when someone else is in crisis, what outsiders see as me being clinical and detached is actually me processing a huge amount of empathy, balancing my words to help encourage someone out of crisis.

  • It is strange crisis I can keep calm in, someone doing something stupid because they are being lazy on inconsiderate makes me lose it big time.

    Strange I used to be more of a "loon" before and people used to query when this guy in 40s would grow up, now I am far more staid

  • Ah, stupid/lazy/inconsiderate, I used to put up with far too much of that, now I have more of the "Life's too short" about me. I've managed to keep hold of my whimsy and nonsense, sometimes, I need it, to get me through the days when I can't put my boots on the right feet.

  • being an ex-teacher this thought had also crossed my mind especially with communication difficulties which can be linked to the bi situation. But as part of my coping strategy is routine so I don't forget medication etc hopefully I would be on the higher end Asperger's end of the spectrum!! When teaching a child with Asperger's he said that he wanted to be 'normal'. After saying that there is no such thing as 'normal' I said that all of us are worried some times about the things that were worrying him. I think all of us are on the autistic spectrum at some level!!

  • People with ASD are as diverse a group as any.

    Just to say that there is a bit about wikipedia in relation to the pathophysiology of autism , the brain regions involved but there isnt a completely clear underlying mechanism. Will try to read it later.

    I'll call the boy with autism/aspergers in my care M. hyperacusis is common to us both, triggers are the same , we react in the same way. hyperacusis is found in autism and brain injured people. we are both very dyspraxic. i dont know the brain regions involved in dyspraxia. having said that i dont know if dyspraxia is part of my ataxia. i dont know much about dyspraxia other than it involves a disorganization of thought as well as being outwardly disorganised. M's dyspraxia disappears when he plays an instrument.

    i'm alright with change and routines being changed.

    M has short term memory problems so do i.

    M doesnt like comparing our brains at all, he thinks we are markedly different.

    M has a fantastic long term memory and has a systematic way of remembering databases of dates, and working stuff out that a neurotypical person could not do.

    Sometimes ive thought if anything is not in one of M's systems, to him then it doesnt happen, wont compute, if there is no system for it he doesnt know how to handle it.

    Ms days and nights are timetabled to a ridiculous degree, he wrote it all out. If anything deviates from this in a way that he doesnt like its not good, unless M changes the timetable himself or thinks that the change is agreeable.

    people with ASD often have like a range of 'add ons' like OCD for example.

    i am trying to remember the brain regions involved in autism, the amygdyla obviously. somehow the cerebellum can be involved, i'm not sure that i quite understood how at time of reading about this. there have been some studies into testosterone somehow and autism but this isnt very solid science (i think) whether it will become so i dont know.

    i elected to write an extended piece of work on managing autism in the classroom as part of a primary education degree . i didnt finish that degree for reasons that were not to do with the degree.

    M attended a fantastic unit in an excellent mainstream highschool. These were 5 very happy years.

    M needs tailored support to be able to get through life. When he is a bit older he will need a support/key worker, unless it is me.

    I have battled primary school and FE college many times for not providing the support that he is legally entitled to. he floundered without it.

    M's family is a big part of his life, I could enlarge on that. He comes out with very intuitive comments about us and makes up imaginative comedy sketches. M has one friend in particular who he favours, he has a couple of other sets of friends, all friends are involved in music. M likes nothing better than to be among friends on a night out, or a day in town. he goes out and gigs, and goes to see gigs, but he doesnt go out regularly every friday and sataurday eg.

    M thinks that he has become more autistic as he has got older. I think that as M's support that he had in the autism unit in high school has been removed he has become more autistic, just as he was finding things challenging before he had ASD support from trained people.

    people with ASD obviously have a social and communicaion disorder. in M's case at least this is highly complex, and .. i am searching for the right word.. ( i dont know), because M can be very perceptive , and empathetic and incisive, and he has a way of showing all these things in how articulate he can be. yet at other times, i can see that there is a communication disorder there.

    i 'll leave this here. but if i have a bit of time later to look into your question properly i might come back to this or post again.

  • Sosban, wn i ddim/ i dont know sorry. i can surely see where youre coming from. ive read books on autism and i'd love to really know how the autism unit improved M's life so much. come september i will be getting in touch with them again.

    with a couple of their strategies they seemed quite simplistic there must have been more to it than that.

    the one on one support helped so much with M. i of course met with the staff if issues arose, and went to parents club but i dont really know how they did what they did in the autism unit. i just know a little bit about autism. i really should brush up on it all again. sorry that nothing springs to mind immediately on how to manage autism that could be readily transferrable to brain injured people like us, but thats not to say that there isnt anything there in the literature.

    me and M try to work it out together and sometimes i make it up as i go along based on what we know.

  • diolch / thanks

  • Ive always said this as i seem to have developed autistic traits.

  • Hi Sospan,

    Sorry this is perhaps a late reply I get on with my partners son who is autistic quite easily and and have good conversations. In fact since being independant he has to coin a phrase 'come out of his shell' not sure that is a phrase perhaps just made it one, or changed the wording? something I do often.

    Yes he gets quite a lot of help well that's if he goes for it or even accepts the help. I get none but for the care of my partner.

  • This is a ridiculously late reply, but the thread appeared in my "related posts" for some reason. I've often compared these symptoms to Asperger's. I even went for an Asperger's test, thinking I could wheedle my way into treatment by going via that route. But I didn't get the diagnosis in the end.

    Interestingly enough, cognitive testing supports the idea of similarities. A "spiky profile" on neuropsych tests is common to brain injury, autism and AD(H)D. This means there are significant differences between each of your cognitive skills, when they're "supposed" to be all on similar levels. So it makes sense that there would be things in common in the way these conditions manifest.

    Lia

  • A lot of the problem with medical professionals is that they quite often "pigeon hole" symptoms and treatments and are blinkered in what happens outside their own speciality. So we may well be missing out on related research and treatments that provide promising results in other ailments

  • Yeah. I think they're also too focused on causes and labels. Neurological weirdness is neurological weirdness whether it's labelled MS, ME, post-concussion, autism or something else. But they have different "gold standard treatments" and are handled with different amounts of respect.

    I'm quite angry about what's been happening with ME lately. There was a study in 2011 which "recommended" exercise regimes, despite the fact they're pointless torture to ME sufferers. Many patients were put through them anyway. Now they've reanalysed the results and the benefits of exercise are nowhere to be seen. What we're getting - neglect and psychobabble - is positively nice by comparison.

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