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SteelMaiden
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25 Sep 2016, 6:12 pm

I will read other people's threads soon. I want to be of use to others as well as asking for help. Just that I am near meltdown atm. I just took some haloperidol.

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I have been having serious difficulties with speech over the last month, more so then normal. The only way I can communicate with ease is by typing. When I speak, I forget the names of every day objects, I struggle with syntax and I say nonsense sentences instead of English.

My uni tutor said I will have to do oral presentations this year! I am not even allowed to write a verbatim script and just read it out, which I could sort of do as I find reading text out loud easier than producing speech de novo.

My mental health team care coordinator keeps calling me, despite me texting her that I am preferred nonverbal so can she text me and not call me. My psychiatrist ended my appointment as soon as my support worker said I'm struggling with speech.

And my parents are forcing me to speak and then getting mad at me when I don't make sense. My dad also wants me to travel to CENTRAL LONDON to see him and that I should do it alone! I cannot even go to my local shop alone, let alone get on an underground train and turn up in some crowded station and make my way through it without ending up arrested!

I had a meltdown yesterday where I broke the kitchen door and got blood on it too. Today I ended up lashing out at my mum.

I don't know how to get it into these people's heads that I am classic autistic and the difficulties and differences that come with it!

Also I'm getting my support reduced due to understaffing. Despite being told I need round the clock care, I will now be getting two support sessions a week when I go back to uni! I will still receive full time 1:1 support at uni and a free taxi service to and from uni though. My alcoholic mum has become my unofficial carer. :/

(I live alone and need the space of this house)

I don't know what to do? Suggestions?


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kraftiekortie
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25 Sep 2016, 7:11 pm

Can you talk to your professor directly about being able to write a script for your oral presentation?



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25 Sep 2016, 7:23 pm

Does your university's disability department not understand what non verbal autism is? Surely your support worker understands? If there is anyone in your life that understands, have them explain it to others on your behalf. People are much more likely to listen to a third party than they are likely to listen to you if they are already ignoring you.


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25 Sep 2016, 7:40 pm

It sounds incredibly frustrating and overwhelming.



SteelMaiden
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25 Sep 2016, 7:42 pm

Thanks.

I'm going to type a letter to my care coordinator and my psychiatrist. My support worker knows about autism but she's not assertive enough. I will text her tomorrow about this. At least she does well with texting, unlike my care coordinator.

I'm going to also ask to be allowed to write a script for my presentations. If my tutor kicks up a fuss I will complain.

Does anyone have any links on nonverbal autism that are readable and informative? I'm thinking I could print out some info for these people mentioned.


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SaveFerris
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25 Sep 2016, 7:42 pm

What are you being prescribed Haloperidol for? I am not a trained Dr or have any medical training but I have been on a lot of antipsychotics ( 25 years ago ) and found that nothing helped me and I only suffered as a consequence. Don't stop taking your medication but definatly ask your Dr about the exact reasons why you are being prescribed this drug and how is supposed to benefit you then do your own research.

I also advise don't step out of your comfort zone while you are feeling fragile and be brutally honest with your parents and others. I've been in a position where I wasn't making sense to people and it led to a full meltdown. I had a short stay in the mental hospital but they said it wasn't suitable for me so they handed me over to the Crisis Team who were brilliant and very helpful. You can get through to the Crisis Team via A&E , you could type out a letter explaining your issues and take it with you although I imagine a visit to A&E to be daunting for you. I know first hand how scary this can be but you need an intervention asap before things spiral out of control.


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SteelMaiden
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25 Sep 2016, 7:51 pm

Thanks.

I take haloperidol for my severe challenging behaviour. It has stopped helping lately though. I'm seeing my psychiatrist on the 7th of October and my support worker will be there too.

I will be brutally honest as I'm sick of my care coordinator, parents, uni etc being so ignorant and annoying.

I cannot go to A&E unfortunately. Last time I went there I had a full blown meltdown and ended up with three police officers restraining me for over two hours. They had to forcibly sedate me.

I need more support at home but there is understaffing so I struggle at home too. I also have chronic severe insomnia which means I am prone to meltdowns at night too.

I'm sick of this life.


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SteelMaiden
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25 Sep 2016, 7:52 pm

I'm going to contact the social services.


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SaveFerris
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25 Sep 2016, 8:07 pm

SteelMaiden wrote:
Thanks.

I take haloperidol for my severe challenging behaviour. It has stopped helping lately though. I'm seeing my psychiatrist on the 7th of October and my support worker will be there too.


I've been on haloperidol and found the side effects awful. I am convinced that not one of the many antipsychotics I have been on has helped , any improvements I had I put down to just time healing me and not being so stressed out. I am afraid I don't have any other useful advice to offer except hang in there , things will get better once you get the help you need.


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SteelMaiden
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25 Sep 2016, 8:14 pm

I don't get any side effects from 7.5mg/day of haloperidol. But when I was on 20mg/day when I was 19, I was able to carry out a basic voluntary job without too much challenging behaviour, but I was falling asleep a lot and had parkinsonism.

I am a pharmacology student, specialising in psychopharmacology. So I know a lot about meds. I'm debating whether to ask for 10mg/day haloperidol, or to change to zuclopenthixol or similar. I'm on olanzapine 20mg/day for prevention of psychotic episodes (used to have them but been in near remission for a year now) and severe OCD. And clomipramine for the OCD. Although olanzapine can occasionally worsen OCD....not in my case though.

Thank you BTW. I will get through this.


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SaveFerris
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25 Sep 2016, 8:24 pm

SteelMaiden wrote:
I don't get any side effects from 7.5mg/day of haloperidol. But when I was on 20mg/day when I was 19, I was able to carry out a basic voluntary job without too much challenging behaviour, but I was falling asleep a lot and had parkinsonism.

I am a pharmacology student, specialising in psychopharmacology. So I know a lot about meds. I'm debating whether to ask for 10mg/day haloperidol, or to change to zuclopenthixol or similar. I'm on olanzapine 20mg/day for prevention of psychotic episodes (used to have them but been in near remission for a year now) and severe OCD. And clomipramine for the OCD. Although olanzapine can occasionally worsen OCD....not in my case though.

Thank you BTW. I will get through this.


I found the parkinsonism scary as hell even though I knew they were side effects.

You seem pretty clued up about your meds which is great. I find it unsettling when your shrink reaches for his BNF before prescribing new medication , it's make feel even more like a guinea pig than I normally do - If I sound jaded about British physchiatry it is because I am :lol:


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SteelMaiden
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25 Sep 2016, 8:36 pm

I hated parkinsonism because it stopped me from exercising, which is extremely important for me. I told my psychiatrist that I am decreasing my dose and she agreed with that, so long as I would go on olanzapine too. My psychiatrist always asked my pharmacological opinion on my meds, although sometimes psych ward doctors, during admissions, would insert drugs into my regimen. Which was annoying.

Now I do not allow doctors (unless I am sectioned, then I have no choice) to prescribe be meds that don't sound pharmacologically right. I usually suggest better alternatives and get those prescribed instead. My neurologist didn't like my approach but he soon learnt how assertive I am about meds.


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Jacob12
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25 Sep 2016, 8:54 pm

This may or may not be helpful, but I have a suggestion regarding your oral presentation. When I give speeches, I've found it quite helpful to write out the speech I'm going to give verbatim, and then write the major points in bullet points on flash cards - you know, the first line of a paragraph, key phrases, or main ideas.

Then, I practice the speech as I've written it. I do so alone at first, memorizing the speech, making it fluid, and working on my gestures and tone. I do this until I have it memorized. Then, I find someone to practice the speech on. By this point, the notecards will jog your memory as you give the speech.

I used this strategy to pull myself out of a deep hole in a public speaking class. I once was assigned to give a 3-5 minute speech. I did my research the night before, writing notes from a book, and then putting them in bullet point format in typing. I had three pages of notes, and went to bed early in the morning. I did no practice, and decided to "wing it" entirely. I figured I might go slightly over and spend 7 minutes, but that my speech would be so good that it would be overlooked. I ended up spending 27 minutes in passionate rambling before being cut off. The entire class was mad at me, and I sat down, feeling terrible. In the moment, it felt like one of the low-points in my life for sure.

The next speech, I used the strategy I outlined above. I wrote down what I was planning on saying verbatim, and then I practiced the day before, the morning of the speech, and found someone I knew to practice on at lunch right before the speech. The topic was about how chocolate pie is the best dessert. It was a lean, yet powerful 3 minutes. As soon as I delivered the electrifying final line: "...choose your destiny! Choose chocolate pie!" the class erupted into enthusiastic applause, and one person actually yelled "He redeemed himself!"

Anyway, that's my advice if you ultimately aren't allowed to use a verbatim script.

A) Write the presentation down verbatim, transmit the main elements onto bullet-points in flash cards, and practice, practice, practice.

B) Use any possible anxiety and turn it into passion. Push through it, and let the adrenaline be your fuel.



Last edited by Jacob12 on 25 Sep 2016, 9:01 pm, edited 2 times in total.

animalcrackers
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25 Sep 2016, 8:59 pm

SteelMaiden wrote:
My uni tutor said I will have to do oral presentations this year! I am not even allowed to write a verbatim script and just read it out, which I could sort of do as I find reading text out loud easier than producing speech de novo.


Can you use AAC/text-to-speech? It doesn't seem reasonable to refuse to let you read from a script, but if they insist you aren't allowed to write a script then AAC/text-to-speech should be the written equivalent of speaking on the spot.....I can't see how they could get away with refusing you even that.

SteelMaiden wrote:
My mental health team care coordinator keeps calling me, despite me texting her that I am preferred nonverbal so can she text me and not call me.


Can you or your support worker ask if there is some reason that she cannot text you? You really should not even need to justify a request like that unless your team care coordinator is dyslexic or has some other serious difficulty with reading/writing...

SteelMaiden wrote:
My psychiatrist ended my appointment as soon as my support worker said I'm struggling with speech.


That doesn't make any sense to me....if it were me, I would want to know why.

SteelMaiden wrote:
And my parents are forcing me to speak and then getting mad at me when I don't make sense.


If you didn't rely on them for support, I would suggest you just tell them that if they want to communicate with you they have to accept that you're going to be writing/using AAC/signing/[whatever else] and that you won't put up with it if they try to pressure or bully you to speak. And then ignore them when they pressure/bully you.

I'm not saying you shouldn't try this right now....I just know that when you are dependent on others (especially parents, I think) it gives them power over you, so it's not always possible to set boundaries like that.


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SteelMaiden
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25 Sep 2016, 9:05 pm

animalcrackers wrote:
Can you use AAC/text-to-speech? It doesn't seem reasonable to refuse to let you read from a script, but if they insist you aren't allowed to write a script then AAC/text-to-speech should be the written equivalent of speaking on the spot.....I can't see how they could get away with refusing you even that.


I will ask about both options. My uni is not a nice instiution though and they discriminate against severely disabled students like me.

animalcrackers wrote:
Can you or your support worker ask if there is some reason that she cannot text you? You really should not even need to justify a request like that unless your team care coordinator is dyslexic or has some other serious difficulty with reading/writing...


I asked her and she avoided answering. I'm going to put it in writing. I'm seeing her on Wednesday. I'm going to type her a letter about it. I'm good at expressing myself on the keyboard.

animalcrackers wrote:
That doesn't make any sense to me....if it were me, I would want to know why.


She said it was because she couldn't have a coherent appointment if I can't speak. So much bulls**t but that's NHS mental health teams for you...

animalcrackers wrote:
If you didn't rely on them for support, I would suggest you just tell them that if they want to communicate with you they have to accept that you're going to be writing/using AAC/signing/[whatever else] and that you won't put up with it if they try to pressure or bully you to speak. And then ignore them when they pressure/bully you.

I'm not saying you shouldn't try this right now....I just know that when you are dependent on others (especially parents, I think) it gives them power over you, so it's not always possible to set boundaries like that.


I'm going to try with my dad first, introducing AAC to him, as he is educated and hopefully will work it out logically. My mum is illogical by nature and also not very intelligent, as well as being an alcoholic, so I'm not sure with her. I've had six different professionals talk to her about my autism and she still doesn't understand it at all. Maybe I should just depend on her less. I'm going to ask for more support from my support workers so that I rely on my mum less.


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