Mental illness as an autistic child. (1 Viewer)

[Rickboy]

As many of you already know, my 10yo son is autistic. However, over the last few years, other issues have started to crop up. They were really amplified during the COVID lockdowns IMO. The initial issue was severe ADHD but my son also exhibited psychotic behaviors. For instance, he would find bugs and dismember them or pull their legs off. Worse, he would hit my wife or target a smaller child at a park and push them off a high point at the playground. Fortunately, in the case of other kids, we’ve been able to prevent any injury. We’ve been working with in home therapists since 2020 but things never really got better. In March, the great resignation caught up with the therapy as all of our therapists and assistants quit. Conduct at school kept getting worse with intentional harm being caused to himself and other students.

But things came to a head this weekend. My wife and I were on a telehealth meeting with our son’s doctor. During that time, our son was playing in the back yard and found a ground level bird nest. He proceeded to kill three chicks and pull their legs off. He also photographed what he did and was proud of it when he told me. I informed my wife and she became very emotional as she realized that this was an escalation that was leading him to a much darker place. It got to the point that she had a pretty bad panic attack that put her in the ER.

While in the ER, she explained everything to the doc and he asked her to have our son admitted to the ER. We did so and he promptly put him on a 72hr medical hold. We did not know this was coming. While there, the hospital started calling facilities to find a bed for him. All the facilities that had bed space didn’t take minors. The ones that did take minors are completely full. We remained in the ER for over 48 hrs until the doc let us be discharged. He advised us to take our son to the ER at Denver’s childrens hospital. They have a psychiatric center for kids there. We’re planning to take him on Thursday.

As you might imagine, we’re pretty heartbroken over the whole thing. If they can’t find a successful treatment for our son, well who knows. There really aren’t mental institutions or long term care facilities for him. I’m worried that he’ll eventually hurt himself or another person. Then they’ll lock him up with little or no treatment. This country’s mental care system is vastly worse than medical care. I just needed to vent here a bit. It’s bad enough that my son’s prospects for a happy future are dim, I’m worried that even that future is in doubt.

 

[Madmarsha]

I wish I had something useful to give you. I don't. I am not a parent but I hear your pain. I can't imagine the nightmare it would be to lose a child, but this is also a nightmare for you as parents as well. This is not what you want or expect when you have a child. You want to do something, you're not ignoring the issue but there is no obvious answer. I hope, hope, hope the children's hospital can help you.

 

[BayouSAINTJoe]

As many of you already know, my 10yo son is autistic. However, over the last few years, other issues have started to crop up. They were really amplified during the COVID lockdowns IMO. The initial issue was severe ADHD but my son also exhibited psychotic behaviors. For instance, he would find bugs and dismember them or pull their legs off. Worse, he would hit my wife or target a smaller child at a park and push them off a high point at the playground. Fortunately, in the case of other kids, we’ve been able to prevent any injury. We’ve been working with in home therapists since 2020 but things never really got better. In March, the great resignation caught up with the therapy as all of our therapists and assistants quit. Conduct at school kept getting worse with intentional harm being caused to himself and other students.

But things came to a head this weekend. My wife and I were on a telehealth meeting with our son’s doctor. During that time, our son was playing in the back yard and found a ground level bird nest. He proceeded to kill three chicks and pull their legs off. He also photographed what he did and was proud of it when he told me. I informed my wife and she became very emotional as she realized that this was an escalation that was leading him to a much darker place. It got to the point that she had a pretty bad panic attack that put her in the ER.

While in the ER, she explained everything to the doc and he asked her to have our son admitted to the ER. We did so and he promptly put him on a 72hr medical hold. We did not know this was coming. While there, the hospital started calling facilities to find a bed for him. All the facilities that had bed space didn’t take minors. The ones that did take minors are completely full. We remained in the ER for over 48 hrs until the doc let us be discharged. He advised us to take our son to the ER at Denver’s childrens hospital. They have a psychiatric center for kids there. We’re planning to take him on Thursday.

As you might imagine, we’re pretty heartbroken over the whole thing. If they can’t find a successful treatment for our son, well who knows. There really aren’t mental institutions or long term care facilities for him. I’m worried that he’ll eventually hurt himself or another person. Then they’ll lock him up with little or no treatment. This country’s mental care system is vastly worse than medical care. I just needed to vent here a bit. It’s bad enough that my son’s prospects for a happy future are dim, I’m worried that even that future is in doubt.

Sorry you're going through all of that, I really don't know what to say, but I will say that you're not alone...I have a non-verbal autistic 8 year old. I think sheet isn't going to change until it happens to someone important...you think it's bad in Colorado, it's absolute garbage in Louisiana.

You see in movies all the time where there are these special schools that take these kids in and turn them into autistic wonder-people, super efficient autistic hitmen and so on but the reality is far from it. To me, its all a lie the rest of the world puts out there to make itself feel better about not doing enough.

After diagnosis...its a life sentence for us parents, where it feels like each day is worse than the last, where physically going to work feels like a vacation...you end up having these endless meetings with schools/therapy centers where things are said/promised, but never delivered...You feel like life is a effed up joke where everyone else gets to live a normal life, go on vacations, not replace TVs 2x year, not deal with flooded bathrooms/holes in the walls/broken furniture and have happy marriages, and so on....but none of that is meant for you. I've resigned myself to accepting that he's pretty much going to be the cause of my death one day...the ironic part is that I saved his life as an infant....God works in mysterious ways, I guess.

sheet just sucks....sorry for jacking your thread to vent.

 

[guidomerkinsrules]

Jesus dude that’s tough
Don’t have much to say but keep venting as you need to

 

[Tapxe]

Wow, I don't think I have the words for the amount of sorrow. It sounds like you are doing everything you can. I wish you and yours well.

 

[Rickboy]

Sorry you're going through all of that, I really don't know what to say, but I will say that you're not alone...I have a non-verbal autistic 8 year old. I think sheet isn't going to change until it happens to someone important...you think it's bad in Colorado, it's absolute garbage in Louisiana.

You see in movies all the time where there are these special schools that take these kids in and turn them into autistic wonder-people, super efficient autistic hitmen and so on but the reality is far from it. To me, its all a lie the rest of the world puts out there to make itself feel better about not doing enough.

After diagnosis...its a life sentence for us parents, where it feels like each day is worse than the last, where physically going to work feels like a vacation...you end up having these endless meetings with schools/therapy centers where things are said/promised, but never delivered...You feel like life is a effed up joke where everyone else gets to live a normal life, go on vacations, not replace TVs 2x year, not deal with flooded bathrooms/holes in the walls/broken furniture and have happy marriages, and so on....but none of that is meant for you. I've resigned myself to accepting that he's pretty much going to be the cause of my death one day...the ironic part is that I saved his life as an infant....God works in mysterious ways, I guess.

sheet just sucks....sorry for jacking your thread to vent.

Vent all you want brother. I made this thread for that reason and I'm 100% cool with others doing the same.

Colorado isn't bad when it comes to Autism. The schools are great for it. It's the other issues that he has that are keeping his autism therapies from being effective. We actually moved to Colorado, from Texas, to get him good therapy. I can't imagine how much worse Louisiana is from Texas.

I'm just scared to death that my kid will one day be a headline after he's killed someone. I don't think he'll be capable of doing something crazy as a school shooting but I'm not risking it. He's never once seen my firearm and I don't risk getting a 2nd one. But I do think that he'll one day kill another person if he isn't either confined or effectively treated.

But anyways, Vent brothers and sisters. I've got nothin' but love for anyone going through this.

 

[SaintsBrazil]

At this point you can still choose your facility. Do your research and reach out for help.

 

[longtime lurker]

This thread hits real close to home for me. I’m the dad of two autistic boys. My oldest is 10 and my youngest is 8. My oldest is moderate to severe and the youngest is non-verbal severe. I identity with the heartbreak mentioned above. The high hopes that you have early on that come smashing down. I’m still coming to grips that they both will probably never live on their own or have the typical kind of life I think that we all hope for our children. I’ve spent so so many sleepless nights stressing about what their lives in the future will be like….especially when I’m no longer here to protect them and help guide their futures. It has devastated me and my wife’s own lives. Its tough to open up about this. But I think it helps to get it out. I love my boys more than anything in this world.

I know how extremely lucky my children are to have good support in their drs and at school out here in CA, but ever since covid we have not been able to find an ABA company to help with their therapy. It seems like all the therapist just disappeared.

Thanks for letting me vent too.

 

[Brad Mojo]

I don't think I've ever posted "I'm praying for you" in any of these threads because it seems so cliche and worthless, but man, I really mean it in this case. On the religious scale I don't even budge the needle, but this makes me realize how truly blessed I am compared some, and I don't know what else I can do for you. I just hugged my two kids. I don't have to say I will pray for you, because I actually just did already.

 

[tenordas]

This is out of left field, and maybe not helpful in any way, but you might consider a brain biopsy to see if he has some kind of brain infection.
I'm not suggesting that has anything to do with the autism, but certain brain infections can cause behaviour that is considered psychotic, and they are treatable. It might be a complete waste of time, but I'd look into it.

Our oldest is autistic, but very high functioning. We have been blessed with help throughout his life, though there were many times we had to fight the school system for what he needed.
Early diagnosis, some good doctors, ABA and other therapies, social story boards and other strategies helped moderate his problems and have kept high functioning. While there were many struggles along the way, we've been blessed that he has never gone to some of the terrible extremes many have experienced. He's 24 now, and we don't know if he'll ever be able to live on his own, but he is relatively self-sufficient. He still isn't very good in social situations, but he's much better than he was when he was younger about blurting out inappropriate, insensitive, or otherwise embarrassing statements.

Praying that you find competent doctors who can help him, and are willing to take the time to do so.

 

[Rickboy]

This is out of left field, and maybe not helpful in any way, but you might consider a brain biopsy to see if he has some kind of brain infection.
I'm not suggesting that has anything to do with the autism, but certain brain infections can cause behaviour that is considered psychotic, and they are treatable. It might be a complete waste of time, but I'd look into it.

Our oldest is autistic, but very high functioning. We have been blessed with help throughout his life, though there were many times we had to fight the school system for what he needed.
Early diagnosis, some good doctors, ABA and other therapies, social story boards and other strategies helped moderate his problems and have kept high functioning. While there were many struggles along the way, we've been blessed that he has never gone to some of the terrible extremes many have experienced. He's 24 now, and we don't know if he'll ever be able to live on his own, but he is relatively self-sufficient. He still isn't very good in social situations, but he's much better than he was when he was younger about blurting out inappropriate, insensitive, or otherwise embarrassing statements.

Praying that you find competent doctors who can help him, and are willing to take the time to do so.

The program I’m trying to get him into, at Children’s Hospital in Denver is pretty comprehensive. Everything is on the table at this point. It’s attack it now or lose this war. So left field isn’t left field anymore.

side note. I watched Kenobi and forgot to take my Unisom. So it’ll take a while for it to kick in. I used to sleep so well that the Army diagnosed me as a hypersomniac and even discharged me after ~8years. No complaints, it worked out well for me. But here I am unable to get to sleep on my own anymore because I hear every single creek in the house that makes me think my son is up and perhaps thinking of eloping. Last week he got to the back yard before I reached him. Even with unisom in my system, I’ll wake up if his bedroom door creeks open. I’ve got locks on every single window in this house. A few months ago, I didn’t have the screw type lock tightened down enough and he got out and onto the roof of the house from his bedroom window. No harm caused but now I sleep a little less. That lock is much tighter now. God forbid if we have a fire in the house.

On the plus side, because of all of this I’ve gotten A LOT more patient over the years. I firmly believe patience is a muscle. With the workout I get everyday, I’m practically Arnold Schwarzenegger at this point.

 

[sammymvpknight]

Boy this is tough. There is significant stress…then there’s what you and your family is dealing with. Definitely be praying for you.

 

[whodatbe]

I feel for you Rick, I hope you find something to help your kid. My nephew is autistic and has anger issues where he will have these yelling fits. My sister has also struggled with finding therapists since the covid lock downs. Though as a family we continue to try to help because that's all we can do.

 

[efil4stnias]

Thinking of you thru this and wishing all the strength you need.

Silly question, have you tried equine or music therapy?

 

[Saint_Ward]

Has he been evaluated by a psychiatrist or psychologist? Has anyone mentioned conduct disorder (due to being a minor)?

How was he originally diagnosed with autism (neurologist, psychiatrist, psychologist?).

Basically, the therapy isn't going to help until he is properly re evaluated and possibly medicated, to then re develope the correct therapy protocol.

I think the children's hospital is the right call. But focus #1 needs to be a proper diagnosis and treatment plan.

My wife is an MSW working on her clinician license. She knows this is beyond her skillset, but would 100% recommend what I'm saying (I asked her)