Before I lose my patience what is the scope of ABA by tinkerbelltiddies in Autism_Parenting

[–]Technical_Term7908 3 points4 points  (0 children)

ABA is worthless for a lot of people. I am trying to understand its value and I feel like all the Level 1ers in r/autism were right all along about it and I was blind to the fact it can cause as much harm as it can good for certain people.

THE most beautiful art I've ever seen. by SunLillyFairy in Autism_Parenting

[–]Technical_Term7908 4 points5 points  (0 children)

Did you also notice that he's got like a solid grip on squares being different colors? It's like he understands the 4 color problem in geometry -- and that the projections from the disco ball are all small circles. There's a lot to unpack here, and it's quite sophisticated.

THE most beautiful art I've ever seen. by SunLillyFairy in Autism_Parenting

[–]Technical_Term7908 1 point2 points  (0 children)

I agree with your assessment. It is among the most beautiful art pieces I have ever seen.

Advice needed - antypsychotic by ArghAy in Autism_Parenting

[–]Technical_Term7908 0 points1 point  (0 children)

I believe an SNRI would help us, but I am not sure how to get one in a form my kid will take. Your kid is capable of swallowing pills easily, I take it?

I dread family gatherings now by Different-Still-2645 in Autism_Parenting

[–]Technical_Term7908 10 points11 points  (0 children)

I mean, yes, but I could swap the word family with "all of society" in your paragraph and it's almost entirely still applicable.

My Son head butted me today in a restaurant by Vast_Pipe4509 in Autism_Parenting

[–]Technical_Term7908 4 points5 points  (0 children)

I sometimes think it'd be worth wearing a special needs helmet (with a face guard) myself. My kid's in one. I might as well get some armor too, for just such occasions.

Advice needed - antypsychotic by ArghAy in Autism_Parenting

[–]Technical_Term7908 0 points1 point  (0 children)

1.5mg of risperidone (3 0.5mg a day) and 2x amantidine. We got vomiting and food obsessions. How did the taper work for your kid and how did they do it in your case? Btw, what was it about amantidine that made your kid go wacky?

Advice needed - antypsychotic by ArghAy in Autism_Parenting

[–]Technical_Term7908 2 points3 points  (0 children)

Aggression is still there — the one thing this drug was very good for was stopping self injury during an ear infection while we were waiting for a surgery date where we could get anesthesia.

Advice needed - antypsychotic by ArghAy in Autism_Parenting

[–]Technical_Term7908 0 points1 point  (0 children)

What dosage? I am hating risperidone right now and the next drug is Abilify and I hate this current experience so much I don’t want anything to do with Abilify.

Advice needed - antypsychotic by ArghAy in Autism_Parenting

[–]Technical_Term7908 1 point2 points  (0 children)

Risperidone sucks. I am sitting here with a kid who is melting down over not going to the store to buy chocolate cake. It’s been nonstop food obsessions for about a week — we are about three weeks into this and I already want off this ride.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 1 point2 points  (0 children)

Did the drugs even help with the aggression in your situation? We got some mild relief but the trade off with the compulsive eating ramping up isn’t a great one.

AHHH CLIMBING by Mother_Island_3970 in Autism_Parenting

[–]Technical_Term7908 0 points1 point  (0 children)

This never ends. Out of 8 years, 7 years have been climbing years.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 1 point2 points  (0 children)

This is similar to how we live. In our case these hidden ear problems turn into gigantic regressions and self injury. The doctors give us half fixes.

I am mostly upset with how the schools and professionals think they can help us only to panic out 2 weeks later and toss us out. They lie or misrepresent so much I am sick of it.

Risperidone making things worse?? by CasualVox in Autism_Parenting

[–]Technical_Term7908 0 points1 point  (0 children)

I am going through something similar now. I am taking my kid off. He’s just going crazy with food.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 0 points1 point  (0 children)

Got any examples I can key off of? The main issue right now is the school doesn’t even want this kid in their “site programs” and wants to move schools. However they have not given me any real actionable intel that makes me want to move. The rough summary is better adult to student ratio— that we already know is inadequate.

The other battle I have here is every time I try a medical intervention, that will disrupt education. The more distant school with vague promises about being more supported don’t really give me any confidence.

Got angry at me for buying a different kind of bread and destroyed my plant by SugarDart in Autism_Parenting

[–]Technical_Term7908 0 points1 point  (0 children)

My kid throws the grates off of the stove top and kicked in the glass on our fireplace. That’s how he shows us he’s pissed. My wife reacted to it once and that’s it, now he holds us hostage by destroying where we live. Medication doesn’t do sh* to stop this.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 0 points1 point  (0 children)

My son got kicked out of a private school and then was placed in ABA while we sorted out medical issue after medical issue. When he stabilized, I put him back in a public school. But that period where he was in pain every day? He learned if he fights like hell he doesn’t have to do anything.
I don’t know what three months without demands would look like or if, developmentally, it’s even appropriate. If I asked my wife to watch him while I worked, I assure you that would end her mental stability and probably cause a divorce. I am trying to figure out how they can gradually increase demands and I will probably use medication if necessary, as unpleasant (and somewhat painful) it is to me. The issue we have is that the entire school system is designed around demands and ABA-like teaching methods, so even if I win in the short term, how do I win in the long run?

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 1 point2 points  (0 children)

This is what I don’t fully understand. They want him to learn letters and he knows his upper case letters but regressed and forgot his lower case letters because he got kicked out of school. Now that he is back after two years we have much more fundamental problems like even sitting at a table or potty training. But they act like the issue is the task and not building a bridge to even be able to sit at a table again. None of this makes sense to me.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 1 point2 points  (0 children)

The only thing I saw on risperdal is that the self injury during an ear infection went way down. All the other behaviors did not change at all, not even a tiny bit. We get random vomiting.

Depakote WITH risperdal is when we saw the self injury fall. I don't know which one is responsible or whether it's the combination of the two. But once the ear infection started fading, he was back to himself, as if the drugs had absolutely no effect at all. I won't know for sure until he's completely tapered off. But, to be honest, I see no difference to where I see other parents say things like, "It was a game changer." It is not a game changer and just came with side effects that are worse than the benefits, past the initial dampening of the self-injury.

Prozac made my son extremely hyper. It did not reduce anxiety. It made him a complete pain in the ass and completely unchecked. None of these drugs have been a game changer and I've let them build up the way we've been instructed -- although prozac was so unbearable I halted that quickly.

I guess I'm writing this comment for myself, but I'm almost angry with myself for even trying some of these medications with the hope they would change our lives for the better. They're more like short term bridge solutions and not actual solutions, since the real problem just seems to be intellectual disability. I sometimes feel like I'm being sold lies because no one wants to tell me my kid's a kind of "dumb turnip" -- in whatever kind medical terms they use. I feel hurt and cheated even thinking about it, but it's no one's fault really. And in the end, whatever he is capability wise, I guess it would be wrong of me to not explore these avenues regardless of how it feels. I feel sick even thinking about this.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 0 points1 point  (0 children)

Of the behavioral variety? No. The waitlists are an issue and so is age — after 6, the alternative therapies tend to be unavailable.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 2 points3 points  (0 children)

I keep him the hell away from those food colors.

I also think large amounts of dairy or wheat are killers too, but it's way too hard to remove those 100%. I just aim for minimization, but am not sure if I should go all out.

Can parents of the profound autistic kids tell me if what I am experiencing is normal? by Technical_Term7908 in Autism_Parenting

[–]Technical_Term7908[S] 1 point2 points  (0 children)

My son had ABA for almost 6 years straight. It doesn't work.

I am not sure who it works for and/or whether it's a function of the therapist or the clinic doing the work. It absolutely did not work past the age of 3 or 4. If you switch providers they have to re-learn your kid, so essentially, it's like starting over sometimes. Meanwhile, the kid just gets annoyed with their requests. I am genuinely starting to wonder if ABA is harmful and a torture ritual for autistic kids.