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Medication- Anti Psychotics.

Dad_to_2

Background, I am the father of a Severe and Profoundly Autistic boy. 

  • Son diagnosed at 18months he is now 14. 
  • He has the language and social understanding of a 12-18month old. 
  • He is well into puberty. 
  • He has no friends, he doesn't have the capacity to understand what friendship is. 
  • At 14 he is 5,10 tall and becoming increasingly violent. Wife and daughter not in the firing line, I as the dad am taking the brunt. 
  • He attends a dedicated autism base at a dedicated SEN school. They are struggling to cope. 

Wife and I are at breaking point.

Medication

  • My son has melatonin, has had for 10+ years it doesnt work. 
  • We administer Diazipam when we feel he is in a pre-rage episode state. 2mg/5ml, we administer between 4mg to 8mg, with the agreement of his doctor.
  • Alimemazine is given if we need to sedate our son, ie he is at serious risk of hurting himself or others. Usually me.

Anti-psychotics came up at his last review. His doctor is reluctant to administer as my Son cannot provide feedback. He doesnt understand basic questions. It would be like asking a 6month old how they feel. He also becomes particularly violent in clinical settings so regular bloods are a no go. 

Is there anyone our there in a similar scenario. 

I appreciate its a spectrum disorder, but the VAST majority of the people we have engaged with are not the same as, nor are they dealing with children like my son. 

Does anyone have any experience of the Gen-2 anti psychotics?

  • Pros / Cons? 
  • Which one?

No one will discuss them with us, we only have is doctor, who says they are a last resort, likely the only option left but wont engage with us and discuss them. Its hard to find out any info from people/parents who have been on this journey. 

If you have feared for your safety and locked yourself in a room in your own home. Replaced windows TV etc after a rage episode. Never had a meaningful conversation with your child. Not seen them at peace or rest for 14 years. . . .  but love them unequivocally, beyond any doubt,  then you are the person I'm looking to speak to. 

I know the internet isnt going to solve my woes, but if I can converse with someone who has gone on this journey it would certainly help. 

Kindest regards to anyone who read this the whole way through

From a  loving dad who desperately needs a good nights sleep himself and wants his soon to not be in a state of permanent anger. 

  • in reply to Iain

    Cheers for that Iain. 

    I'm hoping it is puberty. Life's never been easy but it's been a more slippery slope than normal since ten. So a rough 4 years.  

    We have 7 professionals all with a different view on how to proceed. 

    Ranging from do nothing and massages, to anti psychotics and residentials. 

    It's a brave sole who tries to calm him with a massage.  

  • in reply to Desmond79

    Probably is stress yes. 

    Being of the mental capacity of a baby in a 6ft 15stone body would stress anyone out I'd guess.  

    I'm not sure what tech it is you are refering but if there are things you think we may have not yet explored I'm open to ideas. 

    This isnt our preferred or first stop. This is the last possible stop before the preverbial train truly leaves the tracks. 

  • in reply to mrs.snooks

    Thankyou for that Mrs Snooks. 

    My son won't ever work or be able to offer a reply so it is useful to hear from people who can. 

    It is particularly nice to hear a "non-horror" story. 

    I am happy it has worked out for you. 

  • Hi there. I clicked on your post because I saw the query about anti-psychotics. I can only talk to you from my own point of view. I am 51 autistic and have bipolar for which I have been on anti-psychotics for 20 years. I know that there are  huge issues around your situation and I am so sorry for how things are for you, your son and your family.

    From a question about what it is like being on anti-psychotics. I can work and I function normally. I am pretty side effect free. I am on aripiprazole 30mg, and this is to treat psychosis. I think the question about whether it will work for your son, is a question I can not answer. But for me, it is side-effect free and it works.

    Take care,

    Mrs Snooks

  • Dad_to_2 said:
    and wants his soon to not be in a state of permanent anger. 

    That is a particularly distressing situation to be in - I hope things do improve.

    You have a son who is not mentally able to communicate in a meaningful way about his own situation and clearly cannot make an informed decision so as the primary caregiver you have to do this for him.

    He is also becoming a danger to those around him so you must act to protect them, and the only way I can think of reasonably doing this is to medicate him to the point he ceases to pose a danger to himself or your other loved ones.

    Once puberty has passed then a gradual withdrawal of the medication to assess him would seem the right way to go so you can chose an environment to let him be more normal again and see if the anger has mellowed with the hormones.

    The prospect of doing this to him is unpleasant but all the alternatives are probably way too dangerous. I would imagine the doctor would also prefer this approach to having to deal with the consequences of inaction.

    Good luck with whatever path you follow.

  • The thought of children receiving prescribed medication is chilling.

    My brother had similar difficulties, at that age, but he ended up getting back on his feet via Tech.

    It's probably an inability to deal with stress.