Autism and brain injury

[AsaRiften]

I’d like to connect with anyone who is autistic and THEN had a brain injury as an adult.

I’m especially keen to talk about how the brain injury has affected your autism, how your autism affects yours brain injury/day to day managment, and how your rehab/treatment has been affected.

Thanks

(I’m autistic, diagnosed as an adult then had my brain injury just a couple of years later 2018. My autism is much worse now, i am non-verbal often, major meltdowns frequently, and my autism is more severe making it very obvious to people now and impacting my life massively day to day).

[cat3]

Coping with the after effects of brain injury is difficult enough without the added issue of Autism. So I feel for you Asa. I don't have Autism but we have family members who do, so I appreciate some of the difficulties, but can only imagine how hard it must be for you coping with both.

But your brain probably won't have reached its optimum recovery level at this early stage so please don't despair. The process of neuroplasticity can continue for years and, for the first two or three years especially, your brain will be searching for ways around the damaged areas and to find new pathways. So it's a challenging period with the emotional disruption, the fatigue and other new issues...…….especially when coping with other conditions.

Are you having rehab, and if so, how's it going ?

Cat x

[Danger19]

Hello my lovely,

Please try not to worry too much as this can increase problems an individual with autism experiences. I’m a nurse and a lovely Neurologist friend told me that any damage to the right frontal lower lobe can have a negative effect on an individuals emotions. I don’t know the extent of your injury or what parts were affected but this is something that may be a good thing to know. After my injury in January this year I really struggled with anger and aggression. I am diagnosed with bipolar and I do think, looking back now, that to begin with my head injury made my bipolar harder and more obvious. This has all passed now but I had an extremely quick recovery even though I did damage that part of my brain. I know from experience with patients, that autism is a very difficult condition for an individual to manage and cope with so you will be in my thoughts my friend try and hang in there. Just remember you probably had come so far before your injury and you will again.

I wish you a lifetime of peace, happiness, and good luck.

Vikki

[scrambledbrain]

Hi. I didnt have autism but since my Sah due to a malformation, I certainly notice some autistic traits such as not coping with change for example. Others say that any traits they had before seemed to have been heightened, be it emotional, autistic etc. I have a friend with a bubbly personality who laughs at anything - me I cry really easily and before I wore my heart on my sleeve. It costs me a fortune in tissues - but it is getting less and less lol.

It is very early days - I'm 4 years in from what was a relatively small bleed but is a very very slow process. Hang in there my friend.

best wishes

[Cyclingupthehill]

Hi. I was diagnosed with autism in 2017. I suffered a cardiac arrest as a consequence of me attempting to take my own life last March and had a hypoxic brain injury as a consequence.

I'd like to connect!

Regards.

[Cyclingupthehill]

Your story resonated with me. I too have sustained a brain injury 2 years after having a diagnosis of autism. I'm find it very difficult to leave the house and to socialise. My autism has almost been magnified since my hypoxic brain injury. I feel less in control but it does depend on the type of situation I am presented with. My work is bearable but I become more frustrated as if all my toolkit of coping mechanisms I've learnt over 5 decades has been taken away.

[AsaRiften in reply to Cyclingupthehill]

Yes thats exactly how i feel. I cant mask anymore, i am becomging non verbal most days and using an AAC device to communicate, i stim all the time and now have very agressive stims which mean i’m hurting myself with them. I find leaving the house or change of routine almost impossible now compared to befo where they caused me a mini meltdown but then reajusted. I’m needing lots of sensory diet breaks throughout the day where i do sensory actovities just to keep myself coping. My ability to cope with transistion from one activity to another, is what i’ve notcied a massive change in too. I was very classic autism as a child, non verbal, non responsive to people alot of the time, major meltdowns, self injurous stimming etc. I didnt grt a diagnosis because littke girls didnt have autism back in the 80s lol. I was forced ti mask and hide all my autism behaviours due to family and teachers not knowing the dangers that causes. When i finally got my diagnosis in my 30s things started to change a little and i was able to stim a bit more and nderstood what the meltdowns were. Since my autism though i’m basically gone back to that little very classic autistic girl.

[Cyclingupthehill]

The major positive is that you are on here sharing your experience with people who have experience with similar things. You should never think you are not worthy because you ARE. You will constantly learn more about what works for you and what doesn't. There's definitely been a shift in attitude towards people who are autistic. My 8 year old son was diagnosed when he was 4. But he didn't have an EHCP plan in place and was subsequently excluded from his primary school at a young age. Keep your faith and hope and keep helping others. You have certainly helped me with understanding that I'm not alone. So please take that away as a tremendous positive!

[AsaRiften in reply to Cyclingupthehill]

Can I ask, was you autism worse immediately following the brain injury, or was it a progressive change?

[Cyclingupthehill]

My autism is more "pronounced" than prior to the brain injury. Aspects / traits that I have learnt to hide (because like you said Autism wasn't generally appreciated or recognised as a thing back in the 80s) I seem to have unearthed again. This isn't necessarily a bad thing as it makes people more aware and understanding.

[Avro]

Hi AsaRiften,

I'm 58 and was diagnosed with Aspergers when I was 53 and hydrocephalus when 55. Obviously the Asperger's has been with me all my life and my Neurosurgeon thinks is likely that the hydrocephalus has been too. My youngest brother has had it since birth, he was born in 1979 when they checked for these things and I was born in 1961 when they didn't. In a way he was a lot less fortunate than me as he suffered brain damage as a surgical complication when they inserted his shunt which has left him with epilepsy and a mental age of 9. I have both an ETV & shunt now.

So for a lot of life I knew I had problems, but didn't know what the causes were. My Asperger's is mild, but significant enough to have caused me many social and career issues, making life a bit of a living hell really when not known about. A lot easier now I do, but then since the hydrocephalus was picked up I've had two brain surgeries and that has drawn my attention away from the Asperger's for the last couple of years. But I know that the Asperger's is not necessarily a negative thing and that because you think differently and value honesty that's a good thing and part of why you are not like the rest and don't want to be even if you had the choice.

I've had raging 24/7 Tinnitus since the ETV and constant nausea plus a shopping list of other symptoms. I'd dump the hydrocephalus tomorrow if I could!

Take care,

Mark

[Normanbates]

Hi, I have a brain injury and Autisim and it's tough, I feel like I'm far more anxious and prone to panicking, I was not like that before! For example I have misplaced my wallet and then gone into an absolute fit about it whilst getting on/off buses. The other day, the washing machine didn't resume (I forgot to put something I it) and I had another freakout about that as well. Before my brain injury I had a classic car that I still miss and I loved/spent years saving for if and then I was involved in a non fault accident where it was written off (I was in the car hence the brain injury) classic cars were my interest/passion before but since then I have been unable to drive which has upset me and is really effecting my mood. I feel less brave and my short term memory is bad. I don't feel as sharp or fast to do anything and if I don't understand something I get very irritated. I am also irritable and ratty most of the time and I am extremely achy and tired/very hard to get up in the mornings, I feel weak and highly emotional all of the time and it's harder to control and I rarely/ever feel happy and everything feels like an effort. I am far less patient and I often joke that I am 'possessed' because of the brain injury. I have face like thunder now and have lost interest in life! Hope this helps.