Plight of family of an "Aspie"

Intenseworld has pre-empted most of what I would have said here. If diagnosed with aspergers at 41, what on earth were they treating him for before?

If he has been treated for years as paranoid schizophrenic, and wrongly medicated it is easy to understand he will not be well balanced. Some people can develop schizophrenia from unresolved autism issues, as a secondary outcome, as there seems to be a predisposition for this. But other people have been misdiagnosed schizophrenic because the specialists still don't sufficiently understand autism, and there was an assumption of "early onset" schizophrenia (supposed normally to be an adult phenomenon) in children who actually had autism.

There's a story in the literature on autism spectrum about a child who, when asked if he heard voices, said yes. So they took the schizophrenia line. But people on the autistic spectrum are very literal, due to not being able to pick up inference in speech. Yes he heard voices - because he was not deaf. He didn't hear voices that were only in his head. The speciaist should have given him the question in full.

Alcoholism and drug abuse can also be consequences, and people can get very paranoid about how people behave towards them and perceive them because the communication difficulties make it hard to get a balanced perspective on what neurotypicals would quickly resolve.

But as others here have said, its not a predisposition to violence. Meltdowns are responses to communication impasse and sensory overload, and express real distress that the individual is experiencing for very real reasons. Some people on the spectrum may very naiively do inappropriate things, due to lack of social feedback enabling them to identify boundaries, but again not usually violently. Those that get into trouble with the law generally do so because their vulnerabuility has been taken advantage of by others.

You say you don't want to elaborate on the other issues. I do think though you have to address these. While Asperger's may lately have been provided as explanation, it is likely that the harm done to him, and by him to others, is consequential of the effect of autism on his personality, leading to mental health problems. 

While autism may have been a trigger factor it may not actually resolve what has happened to him over 41 years.

I feel so bad for your brother.  It used to be pretty common for people with autism to be misdiagnosed with schizophrenia and filled full of drugs that are very damaging.  Whatever issues he has, could well have been triggered through misprescription of drugs by psychiatrists.  What an awful shame for him, and the clear impact this has had on your family.

I am presuming he is off the drugs now, although he may have high anxiety and even depression and need medication for that as they are often co-morbid with Asperger's/ASCs.

Do post here and ask questions which will assist you understanding your brother, I would say that rather being a victim to your brother's Asperger's you are a victim to the system's misdiagnosis and mistreatment of his condition.  They have no doubt affected his neurology negatively with the wrong medications and that can have far-reaching effects on his personality and wellbeing.  You may find this interesting:

http://www.bbc.co.uk/radio4/youandyours/yy_20041028.shtml and this

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928288/

If he has been mistreated by a previous psychiatrist your family can put in a complaint about it.  For such an incompetence of 20 years I would imagine he deserves compensation.

Hi folks!

i just want to say that I have been hurting and in a bad place emotionally recently. I was hitting out big time. 

I love my brother. I do not judge him. He has suffered a lot at the hands of an incompetent psychiatrist for 20 years. He has been misdiagnosed as a paranoid schizophrenic and put on high doses of antipsychotic drugs. Now he has an explanation and a diagnosis of Aspergers from a lovely kind and very eminent psychiatrist in England.

i feel pain and anguish for him. He has other issues on top of Aspergers. I don't want to elaborate here.

I hope to do a masters degree in Autism next year. I want to understand and to put my experience with my brother and my knowledge to hopefully be of some use to the ASD community.

i know that I have a lot to learn but I will get there. Thank you all so much for your patience, understanding and kindness. And for just accepting me and for reacting so well to my rant.

You are all of value and very precious.

Anguished Sibling, you are as welcome here as anyone else.

I think what we need to understand is exactly what it is your brother has done that has made your family fear for your safety, as you haven't explainined anything whatsoever about this.  People cannot advise you without sufficient information.

You could have been more tactful in your attributing his apparently violent behaviour to having Asperger's (especially without explanation), but that said there is no reason you should feel the need to leave the forum and not post again.

The majority of people on here are parents of children with ASC, with a few adults with ASC and to my knowledge, no professionals at all.

There's room for everyone here.  Don't feel you can't come back.  I'd reply when you posted.

Hi - I feel sorry for everyone mentioned in your post - awful for you all.  Let down presumably by all those services supposed to help you.  I presume you've been trying for many yrs to get help for your brother without success.   I'm a parent of an autistic young man who is autistic but not aspergers.  Sometimes, once someone has been diagnosed with a condition, that condition is identified as the cause of a behaviour.  Sometimes that's right, sometimes it's wrong.  Everyone with a diagnosis of autism is still an individual, with their own personality etc.  It must have been difficult for decades for your brother + your whole family.  I don't down-play that at all.  Then there's the diagnosis in his early 40s.  You've all had more than enough to cope with.  I don't know what's made your brother behave in such a way that your parents had to flee.  There's decades of history behind that.  I won't try to rationalise or take sides because I don't know the details.  But :  I do feel for all of you + the situation you're in.

Anguished sibling -

please stop apologising and do not ever admit defeat and noone would ever wish to silence you - maybe we were giving you the wrong messages.

From my own point of view - yes I found your comments upsetting and unsettling.

But i can also appreciate your very valid concerns 

Also I appreciate how you maybe be feeling - helpless and in fear.

I cannot ever advise you on your personal concerns.

But i can from personal experience tell you that nothing is ever as it seems with autism - we're not so bad really!

With love xxx

I have apologised. I admit defeat. I withdraw from this thread. I have been silenced. No one need panic or feel unsettled or disturbed. I get the message.

(even more) Anguished Sibling.

This is an upsetting and unsettling thread. Especially the 'are we not the real victims of Aspergers' bit.

I don't think that any person intends to be violent but fear and situations that we do not understand can lead to intolerable levels of stress which in turn can lead us to react with "irrational" behaviour.

I really feel for anyone who has gone 41 years struggling with autism on their own - not just because it has obviously had such a negative effect but also cause I've done it myself.

Having said that I am not a violent or aggressive person either and would hate to harm anyone. However I can appreciate that some "behaviour" could be seen as threatening in that it is maybe extreme. Extreme as in a plea for help?

Hello again,

I am genuinely sorry if I have caused any distress. It was really not my intention. I simply wanted to give my Dad, Mum and myself a voice. I have made a mistake.

All I know is that a very eminent Consultant Psychiatrist in England has given my brother the diagnosis of Aspergers Syndrome. My brother is delighted with this. He says he has always known he was "special".

i have shared my story. I rest my case. This forum is not for people like us. It is for ASD people and professionals. You will never hear from me again.

I'm so sorry once again.

Kindest regards,

Anguished Sibling.

I would not say you are 'victims' of his Aspergers, but victims of his behaviour. I have Aspergers and am not by nature violent at all. I have had tantrums in the past, when I might have done something by impulse, such as throw books down the stairs ( I was very upset by my actions when I had calmed down). But I have never plotted to harm anyone, and am not vindictive. In fact, as Intense World points out, the majority of people with Aspergers are not prone to violence. If your brother is violent, I suspect that he might have another, related condition, on top of his Aspergers. Could he have a personality disorder or oppositional defiant disorder? If he is assessed as being a threat to your safety, one option would be to get him sectioned. Are mental health involved?

Hi Anguished Sibling,

I'm sorry to read about the difficult situation you're in. If you believe yourself or your family to be in immediate danger, then the police are the best service to contact. 

Otherwise, contacting local social services, and asking for an assessment of your situation would be a good move. If your parents act in a caring capacity (it was unclear from your post if this was the case), then they can ask for carer's assessment for themselves.

Please do contact the police if you feel yourself to be under threat. 

I'm sure you can understand why this thread may be upsetting to our forum users, and we will be monitoring it accordingly.  

You haven't said what he has actually done that has made your family fear for your safety.

Asperger's as a condition does not make people violent.  Yes, there can be meltdowns, but that isn't necessarily violent towards others.  Perhaps he has a co-morbid condition that exacerbates his traits?  Perhaps he has a violent personality which is nothing to do with him having Asperger's.  Perhaps he has found his environment so difficult he has acted out.  Have reasonable adjustments been made for his condition?