My adult autistic son has akathisia. Any similar cases?

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My 42 yr. old son, who has learning disability and autism, (diagnosed at age 6), unfortunately also has akathisia which is becoming progressively worse.  Akathisia (as far as I know) can only ever be caused by various types of psychiatric medication.  He never needed any of this medication in the first place but it was given to him 20 yrs. ago without my knowledge in a residential care home.  Those initial drugs led to more drugs due to the extreme worsening of his behaviour that the initial drugs caused.  At the time I didn't realise that the drugs had caused his completely unusual (not autistic) behaviour.  I assumed, like the psychiatrists said, that it must be some sort of mental illness which had suddenly developed.  He has gradually developed worsening akathisia which, in his case, is a much worse condition than his autism ever was.  The various psychiatric drugs he's taken during the past 20 years have made his autism and learning fdisability far worse than it ever was in his pre-drug days..  As far as I know, akathisia is incurable and can only be masked by further psychiatric drugs which obviously would cause further long term physical and mental worsening of his condition.  In my experience, medical professionals never mention akathisia to their patients or their families if they can avoid it.  My son's psychiatrist has only recently written "akathisia" in my son's notes even though I first told her in 2002 that my son has akathisia which causes him to become extremely restless and tired nearly all the time.  He has random unexplained, sometimes extreme, outbursts of mindless activity due to the physical and mental stress caused by akathisia, which occurs randomly in varying degrees, and it only stops if he's lucky enough to be sound asleep.  Sometimes his feet don't stop moving all day and instead of standing still, he looks as if he's treading water.  Does anyone on this forum have experience of akathisia?

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  • Posted

    Hi Patricia,

    i don't have any experience with it but I just wanted to say that your son has such a good advocate in you and if more people like you were doctors, we would have less health problems due to drugs that they throw at people without much thought. I'm on the autistic spectrum and I know that in many ways the medicine I've been given has made me worse instead of better. It's sad.

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    • Posted

      Hi Rose,

      I hope that you are able to be medicine-free now, and that you have recovered from the setbacks caused by medicines you took in the past.

      In my son's case, he can't express how he feels (even though he has speech) but I know that he had no sign of the symptoms of akathisia before he was given drugs, and I've never seen these symptoms in any autistic children, or in autistic adults who've never been on psychiatric drugs.  For example, last Thursday,when I visited my son's residential care home o take him out for the afternoon, I was told that he'd been walking about round and round, backwards and forwards, since 5am.  He continued to move his feet, like treading water, non-stop until I said goodbye to him at his residential home at 9pm.  He said he feels very, very tired and I'm not surprised.  Last Sunday when I took him out, the scenario was slightly different - he still moved his feet a lot, but not quite as much as on Thursday - but he was making involuntary snorting and coughing noises at the back of his throat constantly, i.e. several times per minute for several hours.  I asked him if he has a sore throat but he said: "No." He didn't seem to have a cold either. This went on until I took him back to his residential home in the evening, where I assume it would continue until he fell asleep.  He had none of these symptoms, ever, until he was first given psychiatric drugs over 20 years ago at the age of 21 in a (different) residential care home.  Since then, he's had a huge variety of horrible symptoms that I've never seen in anyone autistic who has never been given psychiatric drugs.  I am warning anyone who is autistic, and/or their carers, to look up "akathisia" on Google and ask themselves if it is worth taking these drugs.  Akathisia doesn't seem to be curable.  Of course, not everyone gets akathisia from these types of drugs, but there are numerous other conditions caused by these drugs and people who take these drugs for any length of time will be lucky to avoid getting some of them, such as Tardive Dyskinesia, athetosis, neuroleptic malignant syndrome, "rabbit syndrome", anhedonia, pseudo-Parkinsonism, incontinence, impotence, etc. etc.  This is not meant to depress anyone, but to warn people not to trust their doctor who might say: "No side-effects", or "The effects are only temporary."  In my son's case he's been off all drugs for a few years but his medically-induced problems have not died down.  I long for the days, when he was a child up to the age of 21, when he was just autistic and didn't have all these additional and completely unnecessary iatrogenic problems.  He never needed psychiatric drugs in the first place.  He was at his absolute best when he first went away at age 21 to live at a (seemingly very pleasant) care home.  The thought that the staff (who were short-staffed) might phone the local doctor who injected him with neuroleptics never entered my head.  That was because he'd never been drugged when he was at school. and I didn't know anyone whose autistic child was on psychiatric drugs and I didn't know what to expect.  Now I'm sure that in the UK most learning-disabled adults who are living in residential care are on some sort of prescribed mood-altering drugs.  This is rarely talked about due to "Patient Confidentiality."  The problems caused by these drugs must be huge, and must be costing the NHS a fortune, and they are brushed aside by the medical professionals who prefer to call the problems "part of the mental illness" and proceed to prescribe more drugs.

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  • Posted

    Yes I was put on seoquel which can cause irreversible problems. They didn't tell me that. I think it should be a law , that they inform people. My best years were before I had to be medicated, although I did use benzo's for anxiety. They never seemed to cause a problem. In 2006 " they" the mental health proffession threw every pill known to man at me ...I'm glad I wasn't in a hospital, ( although I was in 2006) because many of them after research I threw away in the garbage. The seroquel was one threw out.

    i am stuck on one SSRI right now but it has made me much worse,more than better.

    its hard to articulate what the hck I feel like on these evil drugs. ( although this particular med causes so much muscle pain 

    i just know I was better even though I tend to have a ton of self stims.

    i hope your son is feeling better. I hope they back off on the meds. I've read that autism spectrum people are real sensitive to medication.i also hope they know how to taper off the meds that don't work. Doctors it seems just keep trying different drugs and more drugs....it's a shame.

     

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  • Posted

    Hi Patricia,

    You've given us a fright knowing that our 8 year old child is on medications. That is, 100mg Sertraline(Zoloft) and 0.2ml of Risperdal. I hate both these drugs. The psych is a professor and his word is not to be questioned.

    I can say this, the Zoloft is useless and is not doing a thing for him other than making him very agitated. When we mentioned this, the advice was to raise the dosage. Well we said you can forget that andcwecwill actually be reducing the dosage. Ideally to zero.

    Initially he prescribed Risperdal at 0.5ml twice a day. That was a disaster. All it did was gain him 30 pounds and turn into a living zombie. Without discussing with the psych, we reduced its dosage to 0.2ml once daily. What a difference? He became the child we always wanted. Verbal, conversational, interactive,social, intelligent and manageable. We are not arrogant enough to describe our child with these words. We never would. These are his teachers words in his communication book.

    The statement about ASD kids being sensitive to medications is understated. We want him off Risperdal and Zoloft. They do not help, they simply mask other problems.

    We are trialling a pre-cursor to glutathione called N- Acetylcysteine. It was trialled by Stanford University and they are actually trying to get a patent for use in ASD. Our observations so far are that it is bringing out language that he would never have used. Almost a surprise to him.

    Finally, we too worry about side-effects of psychotropic drugs such as Tardive Dyskenesia. Our child on these drugs is very agitated and hyperkinetic. I stress that dosage is child / adult dependant. There is no one size fits all and the parent is the best judge.

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    • Posted

      The Zoloft literally destroyed my little girl. I wish I had never put her on that crap. She has Autism and we were always against medication. The doctor convinced us to try Zoloft . We did for three months and wound up taking her off because she went crazy, stopped speaking or making eye contact. Ever since being off she has severe twitch and spasms throughout her body and face. We go to the Neurologist Friday. They are probably going to say it had nothing to do with the Zoloft. That is not true. My kid was one way before the medication and now is very very different. It breaks my heart because I feel like it was the worse decision I have made for her. She is my heart and soul.
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  • Posted

    Dear Patricia,

    Please go on Angie's blog 'Alathisia blog' and read all her comments and suggestions about akathisia. I urge you to contact her directly as she has so much experience in helping people with akathisia recover.

    I am absolutely disgusted with the treatment that your son has received. 

    Your son must be so distressed and you need to take action to relieve him of his pain.

    Please contact Angie and she will give you some excellent advice; as will we all on her blog.

    There is so much you can do to alleviate his suffering and this will not be permenant.

    You are a wonderful mother.

    x

     

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  • Posted

    Yes NAC is making quite a wave in medical circles for certain conditions. Notably OCD and autisim.

    Patricia I urge you not to try anything else with your son until he has recovered. Supplements can be as detrimental as drugs to vulnerable brains.

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  • Posted

    Patricia, I think this is exactly what is happening to my sweet baby girl. She was diagnosed with Autism at two. She is five years old now. In March I was convinced to put her on medication to help her obsessive and ritualistic behavior. We had her on the medication until June. I knew something was not right with it because she just disappeared and was very hyper. Anyway it has been weeks since she has been off the medication and she now has some crazy movement disorder. Her arms and legs just twitch away and her poor little fingers are curled up. She was physically perfectly normal before this medication. I am so worried for my baby and am riddled with guilt. I was told this medication was completely safe. I am sure it is Akathisia. I would do anything to go back to Febuary. My heart is broken for her. I understand exactly what you are going through. Autism is hard enough. This is just unbearable. These drug companies are just not doing right by autistic people.
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