Anyone with an autistic teenage boy? Does your child have very low ambition? My boy is also on a lot meds so his energy level is low. It breaks my heart but it’s either a heavy med regime or an institutional life due to his violent tantrums.

  • Janis
    Mar 21, 2018

    Speaking as a nurse, many medications that are used for Autism which don’t actually treat autism, but rather the concurrent symptoms (similar to ADHD or behavioral issues) can cause very low energy. Some of these include concerta or risperidone as the most common ones I have heard. It is extremely important you have a very good working relationship with your child’s doctor and I suggest finding a specialist. Medication is not always the answer. However, if your child is on medication it is extremely important to never stop it suddenly. It is also to be expected if you ever did stop medication that these particular medications have a “rebound” affect when the child comes off of them. The neurotransmitters in the brain essentially go “haywire” temporarily until they reset and this produces EXTREME behavior, not to exclude violent tantrums. Even with autism, (as an older sister to a child with autism), the best medication is sometimes consistent and loving parenting just like any other child. And yes, it will be tortuous some days. However, you said your boy is a teenager? That also can complicate things depending on where on the spectrum of autism your child lies. Behaviors can be very very difficult to train at this age and depending on the severity of the ASD. My recommendations: 1. Seek a behavioral specialist and stay in close contact with your medical doctor. Let them know the concerns you have. If you feel “dismissed,” And their ONLY recommendation is more medication, I suggest finding another doctor. Find someone who is understanding of your concerns and is willing to work with you. That said, if this is a doctor you have known for a while, they probably know your child very well, and switching can have its own issues. 2. I suggest finding a therapist for yourself. Being a caregiver is no easy task and it can cause burn out. As a nurse, I routinely see a therapist due to the strain of being a caregiver everyday to the sickest of the sick. It is helpful and I feel that I am able to go home to my children and give them better love and attention. 3. As a last bit of thought for the future: it is scary to think of your child becoming institutionalized for violent behavior. I could imagine the feeling would be close to that of “abandonment.” The guilt alone, I could not imagine. I am very sorry for you to have to even imagine that sort of future. However, you know your child best and if there ever did become a true rationalized fear of them harming someone, it is far better to have them in the safe hands of a medical facility specially trained to handle these issues than to have the guilt of your child hurting someone on your shoulders. I wish you and your child the best.

  • George
    Mar 21, 2018

    He has an ABA in home therapist and I am going to grief counseling now. I also have a 16 year old that is struggling also, we are in family counseling. Andrew has been meds simply because he is violent if not medicated

  • George
    Mar 21, 2018

    Yeah, I am hoping someone out there is going through this so I can see what they are doing. I am pretty certain his future will involve an institution, I just hope it has some quality of life with it.

  • Janis
    Mar 21, 2018

    It sounds like you are doing everything you can then. I have never met your son, so of course it is hard from a medical stand point to give much further advice that what you have been doing. From a human standpoint, I hope you find your peace, and your family. One advice from my own therapist that I found is pretty helpful to be reminded of every now and again, “don’t try to solve all of tomorrow’s problems today.” This doesn’t mean procrastinate, rather I think we look so far ahead to the future and are always trying to fix the future before it gets there. In the process we forget about “today.” I worry about the future with my own brother as well. One day my parents are going to get too old to take care of him and I know that my brother will need someone to take care of him as an adult. It is a thought that resurfaces every time that I take care of adult patients in the hospital in this situation. I truly have to force it out of my mind and just say “we are not there yet.” I hope that helps a little. You are not alone.

  • Janis
    Mar 21, 2018

    Also, one more bit of hopeful thought. Some people forget that even with ASD, children and teens still have the same hormones as every other kid. Puberty alone can cause some behavioral issues in teens without ASD. This may just be a really tough time with your son due to those hormone changes. Have you asked your physician about that? And the possibility of medication changes once the stages of puberty pass?

  • George
    Mar 21, 2018

    I appreciate the help and I hope everything works out for your brothers future as well. I am noticing thoughts of the future are causing some present day anxiety for me and that really stinks.

  • George
    Mar 21, 2018

    I have brought that up. So here’s the kicker, he also has psychotic features along with everything else so any med changes have to be slow as they can have not so nice outcomes

  • Janis
    Mar 21, 2018

    I’m sure you already know as well, some medications can CAUSE psychotic side effects as well. It IS a difficult balancing act. I am afraid I am no help there on advice as I don’t have an MD after my name (so I am ethically limited to what I can say), but the RN after it is the one that ACTUALLY sees the effects of the medications I give or don’t give every night and sometimes medical providers forget (though I don’t know how), that they aren’t the ones with the child/adult day in and day out to experience medication changes and how turbulent of an experience that is, on parent AND child. Anyway, keep enjoying “today.” Another recommendation from my therapist to help focus on “today” was to spend 10-15 minutes in bed, actively replaying that day in my head and to visualize the day from start to end, to help appreciate the “moments” good and bad. Sometimes, I’ve been surprised by moments in the day I completely missed them for what they were because my mind was focused elsewhere when it happened. In a way it feels like I “reclaimed” the day back instead of just losing another 24 hours to this void.

  • George
    Mar 21, 2018

    Sounds like you have a wise therapist. I can and do get wrapped up in what needs to be fixed and forget to smell the roses. The med thing is the worst, I don’t know how that will look in the future either. I really wish there was a treatment center out in the country that was outfitted for med changes, you know, prepared for the violence and everything that goes with med changes. Of course I can’t afford anything like that if it in fact did exist.

  • Janis
    Mar 21, 2018

    To credit my fiancé he calls that very thing “seeing the trees, but not the forest.” I so do love those types of thoughtful metaphors. I completely understand. Our health care system does not provide enough for mental health resources, yet at the same time they come up with programs to force people to depend on the government and then get trapped there. I am constantly frustrated by the lack of help and support there is. I have to watch from the sidelines of my patients and their families and be a glorified “cheerleader” when I discharge them with little to no direction on what to do next, because there are so very few resources. What I do offer my patient’s caregivers is the same advice we are given as nurses. You cannot take care of someone else if you do not take care of YOU first. It is not selfish either. You are human too. Perhaps, right before medication changes, take a day or two out just for yourself. Employ the help of friends or family or adult day care centers to have a “zero responsibility” day. This might help mentally relax you enough to be prepared for the medication change after. Even on a routine basis, one a month minimally I hope you do have at least ONE day only to yourself.

  • Janis
    Mar 21, 2018

    Also, I apologize just like any other nurse you meet, I am extremely long winded. Especially because I work nights and my mind doesn’t shut off on a normal schedule. Haha.

  • George
    Mar 22, 2018

    Please don’t apologize, I am grateful for you talking with me. I can’t put in words how lonely being a widower is, your fiancé is a very lucky man. Don’t get me started on our medical coverage, the gap between psychological help and meds and the gap between treatment and after care as you mentioned are unforgivable sins. Yeah, I definitely need a mental health day or three. I see no drastic med changes in his immediate future unless I find, by an act of providence, the perfect treatment center. His diagnosis is so over lapping that most doctors I have talked to, I don’t pick up that they are intelligent enough to help him. I guess I could look into an inpatient facility that can handle a med change and rediagnosis but I honestly don’t think I could afford the place if I find it. Funny thing is, I watched a movie a while back that had the perfect inpatient treatment center, I don’t remember the name of the movie but the dad ran the place and his daughter was one of the patients.

  • Liza M.
    Mar 22, 2018

    I work at a residential school specifically for children and adults fitting the description of your son. I have worked with among and alongside many students for whom many streamline therapies have noy worked and most are prone to violent outbursts. It is the "other side of autism..." That which no one discusses because it is a very difficult journey to witness be party to. That being said, I will back Janis up 100% in saying that young people with autism are still experincing all the same bodily changes that a person without autism is. The added struggle to communicate those changes can amount to a totally different child for quite a length of time. I do not know your son or your situation, and I am not a medical professional. I am a person sharing my experiences. The best life for your son is out there wether that includes a residential school, a day program, in home therapy, medication, or some/all/none of the above. I'm sure it is never easy but you are so important in your child's journey to adulthood and beyond-thank you for all that you do for him.

  • George
    Mar 22, 2018

    WOW, I am so glad someone else has heard of this model. Do you have any resources at all for my sons situation? Everything I find is too far either way, he needs something in between. ABA therapy is good but I am noticing he doesn’t know how to transfer some of the knowledge into behavior so he gets frustrated.

  • Anonymous
    Mar 24, 2018

    Not sure if what resources you have access to or have already used...but Easterseals in a longstanding non-profit that exists to provide services for individuals with disabilities (among other services) from birth through adulthood (including the elderly). They have therapists, schools, dentists, day programs, job support...and if they are not able to fill a need for your son, they will point you in the right direction of someone who can. Hope this helps! All the best to you and your family. 🍀

  • George
    Mar 24, 2018

    Oh, I will check them out. Thanks!

  • Jennifer
    Apr 26, 2018

    I have a 5-year-old son who has autism, but I am also a special education teacher who works in a middle school and high school public school for students with severe autism. Many of our students can be aggressive and many take medications to help with that. It sounds like he is getting all the behavior specialist help he needs and that you are on top of making certain he has medication and everything he needs to be as successful and happy as possible. I am going to agree with those who have pointed out that he is a teenager and this type of tired, unmotivated behavior can be true of many teenagers. I’m also not certain how old he is from this post, but, from my experience working at our middle school site and our high school site with students who range from 11-21, I can tell you there is also a big difference between younger teens and older teens. It’s true of typical teens and it is certainly true of teens with autism. Our middle school site has many more behavior issues than our high school because our younger teens are dealing with puberty-all the changes in their bodies, desires, thinking and, for many, little ability to understand what is happening or, if they have the ability to understand, people shy away from sharing sexuality information with them. Our older high school students are much calmer and happier. I’d also add to make certain he has a good communication system in place if he has limited verbal skills. Unfortunately, so many students with autism go through the system without anyone ever really making certain they have a functional communication system and that’s incredibly frustrating for our teens who so often understand much more than they can communicate without a system in place. There is some excellent work being done with Apple technology-IPads and Itouches-and almost every student we have is able to learn to use them on some level. It opens the world up for them and many love it. Finally, when considering “institutionalization” and what will happen to him down the road, the residential facilities aren’t like the dark days of old. Transition doesn’t look like what it did even 5-10 years ago. There’s a focus on self-determination, meaningful recreation, etc. The transition coordinator at my school once explained to a parent who was upset because she felt like she was failing her son because he could no longer live with her that it’s not abandoning him. We always plan for and expect a time when our children will leave home. Yes, it feels different when your child has autism, but this isn’t like the days of locking loved ones away in horrible places. The best advice I can give is to really explore those options now and get on waitlist, etc before he needs it. Resources can be limited and it is hard if you wait. Other than that, I’m glad you are seeing a therapist because this is hard and there’s no pretending it’s not. The transition team at your son’s school might be a good resource in terms of accessing respite and home care so that you can have some time for yourself...and that can be game-changing. It’s so difficult to care for others when we are depleted ourselves.

  • Houwaida
    May 25, 2018

    Have you ever tried a more natural approach of Hemp oil/ cbd I would love to give you more information if interested. Has been a life changer

  • Liza M.
    May 25, 2018

    Jennifer 👍👍👍👍👍❤