A question for parents with an autistic child/children, or people with severe autism.

[Blast off]

Hi everyone,
I have a question for any parents of autistic children or any people with severe autism. My son who is 4 has severe autism has been going to see a pediatrician who is suggesting we put him on Risperadol (spelling?). I would like to know if any other parents have any experience with this medication and what the results or side effects were? Also,if you yourself have taken it, what were the results or side effects? Another question is this a medication you have to take on a life long basis or can you stop it at some point? I want to hear from all of you before I decide to give my son such a strong medication. Your input would be greatly appreciated. Thanks .

 

[Warmheart]

Your son is just 4? Why does the doc want to put him on Risperdal? Which symptoms does the doc feel this med will help him with? I have myself never been on it. I do know that one side effect is gynomastica, enlarged breasts in males. This happened to a friend of mine.

To make speech come a bit easier for him, to calm his anxiety, to help him be better regulated, have you considered sensory integration occupational therapy?
I suspect Japan would have this. This has helped me the MOST with my speech and ability to pay attention (autism severity). Sensory integration OT doesn't look like more than playing, but there is a science and well-researched method to it.

Could you see if you can get him regular sensory OT?
Now I don't go to OT anymore, but I swing on a swing set, climb a rope, hang from a chin up bar or rings, and visit a sensory room gym regularly. I have fewer meltdowns, and my words are clearer. (An OT said kids very often will get their first words a few weeks after starting sensory OT)

Just a thought. I hope others can answer about Risperdal.

 

[Blast off]

I will definitely look into sensory OT, I live in a very rural area and not sure its available, but sent your message to my wife to have her look for one. I'd travel hours if I could find something other than a strong medication like risperdol ... Thanks again for your input, I really appreciate it. You sure
are an amazing human.

 

[toothless]

the only reason my autism is currently stabilized as moderate classic autism has been through various therapies and risperdal/respiridone, and then a more hardcore anti pyschotic; haloperidol,my behaviors and thinking are still a throwback to severe autism.
the risperdal stopped me from seeing eye contact,i just dont get that reaction from eyes anymore all i see are two hazy lumps,i already do have very profoundly different visual processing and perception though compared to the average aspie or NT.
the risperdal didnt really help my challenging autistic behaviors; so i was put on haloperidol which stabilized my extreme challenging behaviors and to this date im on 8mg of it a day i think.

the downside to the medication for me is the absolute weight gain,i am now 16 stone,i have come down from 20 odd stone which had been caused by the anti pyschotics and 5 other behavioral and epilepsy medications,i used to have regular horse riding therapy sessions but for years now ive been to heavy and i need to get down to around 12 stone,its very hard to lose weight on anti pyschotics.

i was on a lot of epilim as a child because i have lifelong epilepsy but i wish my parents had been offered an anti pyschotic as it might have stabilized my autism/ID behaviors better and gotten me some sort of connection with my mum and dad, they both regretted having had me and regulary mentioned in front of me as they thought i couldnt understand that 'why cant she be more like her sister' [who is aspie and highly academic] ,i wont go into what else as it upsets me but i only developed a relationship with my dad in my mid twenties.

 

[Warmheart]

@toothless , so much courage...
thank you for bravely sharing your experiences. I think the info we share here supports and guides parents who need an inside perspective. Each one of us is different in how our autism affects us, but I think shared experience strengthens us all.

 

[toothless]

thankyou warmheart, i am very passionate about helping people through my own experiences as you are and i think its important we say the negative sides sometimes and not just the optimistic side,its not all plain sailing.

also warmheart,ive just remembered the other possible down side to anti pyschotics and the weight gain i dont want to affect anyones view on APs but just to give my experience [and my experience alone]-basically when i put on all that weight i ended up with sleep apnea and ive had it for some years but only one waking night support staff spotted it last year as she was a trained nurse in her youth,it causes awful stuff like strong daytime tiredness, memory loss,low mood,insomnia ,concentration issues etc and i stop breathing when i sleep i need a oxygen machine which forces oxygen down your throat to keep it open and because of my severe sensory issues and my inability to 'shut off' when something is noticed i have never been able to sleep with the mask on yet and i get told off by the hospital specialists because the machine is linked to them and they can see if im using it or not.

i personally would still choose to go on an anti pyschotic with weight gain and its sub-side effects being possible as the benefits in a lot of our cases; such as calming down severe challenging behavior outweighs the risk, its good though to take as little of them as possible,its when you get to a amount like mine that you start getting issues like physical stiffness and shaking hands etc.

 

[Crossbreed]

My MFA [mid-functioning*] son had Risperdol for some of his co-morbid conditions, but not for the autism itself. (I don't recall any adverse side effects.)

My LFA daughter takes no psychotropics of any kind.

*Shorthand for verbal LFA.

 

[Full Steam]

I have friend whose 4year old is severe autistic. They have been taking him to an integrated therapist (bio balance) for methylation cycle fixes (I'm going through that too, and it's a huge help ) . They found he has a large number of of gene mutations affecting methylation . I have quite a few, but no where near as many.

You can get his genes checked easily and cheaply. We used Ancestry DNA, which costs about$150 US. You can download your raw DNA data and feed it into a tool like live wello, for $20, and you'll see his mutations. You would then need to find a doctor who understands it all.

Our friends also go to Neurofit. I dont know much about it but it's kind on gym work that concentrates on left right cross over movements like crawling which is proven to get the brain hemispheres working together. I know they have seen wonders from this. Their boy had never expressed a preference or feeling , and after the first session told his mum that he loved her for the first time.

Their family and ours have also gone gluten free and removed all food pesticides and prerogatives which has had a huge effect. I react to very small amounts of this stuff, and gluten and cheese made everything worse.

Personally I'd pursue holistic and natural remedies before medication.

PM me if you want more details about any of this stuff.

 

[Blast off]

the only reason my autism is currently stabilized as moderate classic autism has been through various therapies and risperdal/respiridone, and then a more hardcore anti pyschotic; haloperidol,my behaviors and thinking are still a throwback to severe autism.
the risperdal stopped me from seeing eye contact,i just dont get that reaction from eyes anymore all i see are two hazy lumps,i already do have very profoundly different visual processing and perception though compared to the average aspie or NT.
the risperdal didnt really help my challenging autistic behaviors; so i was put on haloperidol which stabilized my extreme challenging behaviors and to this date im on 8mg of it a day i think.

the downside to the medication for me is the absolute weight gain,i am now 16 stone,i have come down from 20 odd stone which had been caused by the anti pyschotics and 5 other behavioral and epilepsy medications,i used to have regular horse riding therapy sessions but for years now ive been to heavy and i need to get down to around 12 stone,its very hard to lose weight on anti pyschotics.

i was on a lot of epilim as a child because i have lifelong epilepsy but i wish my parents had been offered an anti pyschotic as it might have stabilized my autism/ID behaviors better and gotten me some sort of connection with my mum and dad, they both regretted having had me and regulary mentioned in front of me as they thought i couldnt understand that 'why cant she be more like her sister' [who is aspie and highly academic] ,i wont go into what else as it upsets me but i only developed a relationship with my dad in my mid twenties.

Love ya toothless! I'm so glad that things are coming around for you. You are a wealth of information and I am so happy to see life from your point of view. I'm sorry about your relationships with your parents.. They never should have said things like that... If my son is being particularly challenging I just step outside or blast some music on my headset, I never speak badly to him nor will I ever. I know he has such a hard time controlling himself and its not his fault, I know this because I have the same problems just to a lesser degree. Thank you so much for your response and your YouTube videos, I've been watching em steadily since you posted your link to them. You are an amazing person, don't forget it!

 

[Allicat]

My son was recently put on Abilify (generic name aripiprazole), which is the next generation of antipsychotics following Risperidone. He would probably be diagnosed as having Asperger's Syndrome if it were still in the diagnostic manual; he is verbal and cognitively intact, but has all the social and sensory issues as well as the rigidity of thought and single focus obsessions many aspies do. He started the Abilify to reduce his irritability and improve his frustration tolerance.

I did a lot of research before I ok'd his starting it. Aripiprazole still has major side effects, but they are less pronounced than those seen with Risperidone. We have seen the weight gain, but the side effect I worry the most about (fortunately rare, and usually seen after taking antipsychotics long term) is tardive dyskinesia, which is a involuntary movement disorder. That combined with the only short term studies done with it gave me pause, but in the end I decided if it gave him some peace then it was worth trying. Note that there are more studies on the effectiveness of Risperidone, but little on long term dosing as well.

Do I see a difference? Some. He still gets easily frustrated and melts down, but those episodes are shorter and his ability to resume a more even keel is a bit better.

That all being said, 2 things:
4 seems pretty young in my non-doctor opinion, to start Risperidone. There is very little research out there on the under 5 population with it.
Definitely look into occupational therapy as Warmheart suggested, if possible *disclaimer - I am an occupational therapist LOL*.

HTH!

 

[Blast off]

My son was recently put on Abilify (generic name aripiprazole), which is the next generation of antipsychotics following Risperidone. He would probably be diagnosed as having Asperger's Syndrome if it were still in the diagnostic manual; he is verbal and cognitively intact, but has all the social and sensory issues as well as the rigidity of thought and single focus obsessions many aspies do. He started the Abilify to reduce his irritability and improve his frustration tolerance.

I did a lot of research before I ok'd his starting it. Aripiprazole still has major side effects, but they are less pronounced than those seen with Risperidone. We have seen the weight gain, but the side effect I worry the most about (fortunately rare, and usually seen after taking antipsychotics long term) is tardive dyskinesia, which is a involuntary movement disorder. That combined with the only short term studies done with it gave me pause, but in the end I decided if it gave him some peace then it was worth trying. Note that there are more studies on the effectiveness of Risperidone, but little on long term dosing as well.

Do I see a difference? Some. He still gets easily frustrated and melts down, but those episodes are shorter and his ability to resume a more even keel is a bit better.

That all being said, 2 things:
4 seems pretty young in my non-doctor opinion, to start Risperidone. There is very little research out there on the under 5 population with it.
Definitely look into occupational therapy as Warmheart suggested, if possible *disclaimer - I am an occupational therapist LOL*.

HTH!

Thank you for your response. I also take abilify and it really helps me. However not sure on the studies as to how it effects young children long term, in my understanding its a relatively new drug. I live in rural Japan and there are ZERO occupational therapists here unfortunately. Japan is very behind the times as far as neurology goes . I am in the process of making him one of those bouncy swings and hopefully I can work with him on that myself. Can you advise anything other than the swing? I will look at YouTube and find some more activities for him and I to do together. I would way rather keep him off medications if possible, but he, my wife, and I also need the peace. On his next appointment I'll ask about the alternatives to risperdone. Thank you again for your reply. All input is very helpful.

 

[Allicat]

While these aren't professional recommendations (obviously, since I don't know your child), there are some things you might want to explore. If it's possible, try a sensory space/room/corner/closet - whatever works for your home. Below are some links to different ideas folks have had for making one. Take a look thru, and see which activities would appeal to, and be safe for, your lil one:

Creating A Sensory Room On A Budget - eSpecial Needs Blog
DIY Sensory Room
DIY Sensory Room on a Budget - My Atlanta Moms Club

Forgot to add: If you can get a hold of The Out Of Sync Child by
Carol Stock Kranowitz (click on her name to see her website), that also might be helpful. Many folks on the spectrum also have sensory processing disorders; her books are exceptionally helpful in figuring out what you can do to address it.

 

[toothless]

thankyou Blast off! you are also an awesome parent,my dad is aspie to and i think its because we were total opposites in some respects that he felt no connection to me.
but you are doing everything you can for your lad at such a young age and it will make a huge difference to him as an adult, for me there was no support or understanding for my parents when i was 5,my mum was blamed by the GP for being a 'very cold' mother -ie sigmund freuds refrigerator mother theory of autism,she still feels she is to blame today and suffers from significant depression, there is no blame to autism,autism gives us a completely different perspective of the world and everything in it;i think thats a good thing, you just have to take the rough with the smooth;ie the speech and language impairment,the functioning impairment,the challenging behavior,the extreme sensory issues,the incontinence/toileting issues,the intellectual impairment etc,i think all of that is made moot by having a supportive understanding family to allow the autist to develop as far possible, multi disciplinary support is the way to go- SALT,SIT,OT, horse riding therapy, music therapy,play therapy etc.
sorry for waffling on.

 

[Blast off]

I made a sensory OT swing for him! He loves it, next I'll make a ladder! Thanks for the suggestion!

 

[Allicat]

Oh my gosh; is that YOUR lil guy in the swing? He's adorable!

 

[Blast off]

Oh my gosh; is that YOUR lil guy in the swing? He's adorable!

Yep that's my boy! I don't know how he got so cute haha seriously.. Thanks!!

 

[Pixen]

I've been on Risperdal for mood and self harm behaviours. It didn't help. I have never found anything that helps my autism. I still self harm, get angry and frustrated, irritated, don't like to be touched, can't stand loud noises or routine changes, etc. I have been on at least 13 antipsychotics (which is what Risperdal is).

It isn't a dangerous medicine, my girlfriend is on it, and it helps her sometimes. I do worry about it being given to someone as young as your son though.