I HATE AUTISM

[Anonymous]

OP here. This morning is a little better. I want schools to reopen.

My son is in counseling but just regular old therapy with someone who thinks he has autism - she’s the first person to raise the possibility of it with us, everyone else has just attributed his behavior issues to poor parenting, but interventions that work with typical kids do NOT work with my child. We’re working on getting an evaluation, but it’s hard because he’s a tween and the waitlists are long. Last week we had to call 911 because of a violent episode.

We have tried limiting video games and screens. God knows we’ve tried. It doesn’t work. We’ve tried everything. He’s incredibly rigid and has ONE preferred activity. Screens. Only screens. He will sometimes read, but I can’t afford new books every other day and he goes through them in a day or two.

He’s definitely got anxiety on top of the HFASD, but we don’t think it’s ODD or ADHD (though I wouldn’t be surprised if he got both an ASD and an ADHD diagnosis). I don’t think it’s OCD either, and neither does his counselor (or the team of people she works with - he’s rigid and repetitive, and becomes overstimulated easily and definitely has some sensory issues). It hasn’t been caught till now because he’s bright, and his school serves him very well. But now with expectations getting higher, after school activities taking up time, at least before corona, it’s clear there’s something going on and his executive functioning skills can’t keep up.

But we can’t get a diagnosis, despite the violence and difficulties, because the waitlists for evaluations are super long. So we can’t get any ASD specific help, and it’s going to take a LONG time to get it. It’s hell. And I hate autism. I hate parenting a kid with autism, I hate dealing with our shitty and broken medical system, I hate insurance companies, I hate everything about being cooped up and unable to go places.

[Anonymous]

Hugs OP. I think you should get some counseling for yourself, a place where you can just have some time for you (remember her? I bet you haven't done anything for yourself in a long time). Or at least try a virtual support group.

[Anonymous]

Anonymous wrote:Hugs OP. I think you should get some counseling for yourself, a place where you can just have some time for you (remember her? I bet you haven't done anything for yourself in a long time). Or at least try a virtual support group.

Oh I'm in counseling. I'm just exhausted right now. At least this week I'm essential and am working while my son is home with my partner.

[Anonymous]

OP look up demand-avoidant. There are two types (someone correct me if I'm wrong), one is anxiety-based and called PDA (pathological demand avoidance) and one is ODD (oppositional )

Agree with PP that a good therapist FOR YOU can really help. I'm in my mid-50s--- from a generation and/or demographic where we suck it up and don't go to a therapist because "friends are free therapy." I decided to go about 1.5 years ago. The first one was way too young and I couldn't connect, the other was just not the right fit, then the third one was the charm...for me, I needed someone older...like a matriarch. Like my mom in all the good ways, but also experienced/educated in this stuff, and in none of the unhelpful ways, as in not involved in family dynamics.

Anyways, the reason it's so good is because nobody in your life except a therapist can focus just on YOU. Add training to that, and it's so helpful. Not just to hear you vent, but to help you see what's going on, and then to help you navigate forward.

[Anonymous]

Anonymous wrote:OP here. This morning is a little better. I want schools to reopen.

My son is in counseling but just regular old therapy with someone who thinks he has autism - she’s the first person to raise the possibility of it with us, everyone else has just attributed his behavior issues to poor parenting, but interventions that work with typical kids do NOT work with my child. We’re working on getting an evaluation, but it’s hard because he’s a tween and the waitlists are long. Last week we had to call 911 because of a violent episode.

We have tried limiting video games and screens. God knows we’ve tried. It doesn’t work. We’ve tried everything. He’s incredibly rigid and has ONE preferred activity. Screens. Only screens. He will sometimes read, but I can’t afford new books every other day and he goes through them in a day or two.

He’s definitely got anxiety on top of the HFASD, but we don’t think it’s ODD or ADHD (though I wouldn’t be surprised if he got both an ASD and an ADHD diagnosis). I don’t think it’s OCD either, and neither does his counselor (or the team of people she works with - he’s rigid and repetitive, and becomes overstimulated easily and definitely has some sensory issues). It hasn’t been caught till now because he’s bright, and his school serves him very well. But now with expectations getting higher, after school activities taking up time, at least before corona, it’s clear there’s something going on and his executive functioning skills can’t keep up.

But we can’t get a diagnosis, despite the violence and difficulties, because the waitlists for evaluations are super long. So we can’t get any ASD specific help, and it’s going to take a LONG time to get it. It’s hell. And I hate autism. I hate parenting a kid with autism, I hate dealing with our shitty and broken medical system, I hate insurance companies, I hate everything about being cooped up and unable to go places.

My husband is asd and like this. Can you get a GP phone call for some anti anxiety meds for him, to take daily.?

[Anonymous]

I empathize. Parent training was the best thing that happened to my family. It completely changed the dynamics in our household. We had a rough start (our doors and walls had lots of holes). But after some chaos we had calm.

[Anonymous]

I don’t think you hate autism, op. You hate what’s going on with your son and you’re tired. If he is autistic, he is. So I doubt you’d hate it.

[Anonymous]

Anonymous wrote:I empathize. Parent training was the best thing that happened to my family. It completely changed the dynamics in our household. We had a rough start (our doors and walls had lots of holes). But after some chaos we had calm.

What is parent training? How do we get it?? I need it desperately, but if insurance requires a diagnosis we’re screwed.

[Anonymous]

I have a similar child and Prozac helped immensely. Do you think your pediatrician would be willing to prescribe while you wait for an appointment with a specialist?

[Anonymous]

OP I get that you’re frustrated but it’s enormously offensive for you to fixate on autism especially when you don’t even know if it’s autism, and haven’t gotten any autism services. At this point you need to focus on parenting therapy.

Signed,
Mom who adores her little aspie and his autism

[Anonymous]

Anonymous wrote:

Anonymous wrote:I empathize. Parent training was the best thing that happened to my family. It completely changed the dynamics in our household. We had a rough start (our doors and walls had lots of holes). But after some chaos we had calm.

What is parent training? How do we get it?? I need it desperately, but if insurance requires a diagnosis we’re screwed.

Where are you located? I will send some ideas later today. You’ll have to pay for it — it’s worth a 401k loan or whatever you have to do.

[Anonymous]

Anonymous wrote:I hate it. I HATE AUTISM. It is the WORST thing that has EVER happened to my family. It has destroyed ALL semblance of normalcy or any kind of PEACE in my house. I hate being a mother to an autistic child. I HATE IT.

Strange...then you say he hasn't been diagnosed. So why post AUTISM? You hate your life, son's behavior and nondisagnosis, lack of support etc but don't post this it makes no sense and is offensive to some parents/adults who may have an autism diagnosis!

[Anonymous]

Anonymous wrote:I don’t think you hate autism, op. You hate what’s going on with your son and you’re tired. If he is autistic, he is. So I doubt you’d hate it.

This. You don't even have an official diagnosis. As a parent of a child with autism, I found this title offensive. Please stick to hating particular symptoms, don't assume your child has ASD until you hyave a full evaluation. You have a right to feel angry and frustrated, but please don't contribute to ignorance about a diagnosis that is used on a huge range of children who didn't ask to have it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I don’t think you hate autism, op. You hate what’s going on with your son and you’re tired. If he is autistic, he is. So I doubt you’d hate it.

This. You don't even have an official diagnosis. As a parent of a child with autism, I found this title offensive. Please stick to hating particular symptoms, don't assume your child has ASD until you hyave a full evaluation. You have a right to feel angry and frustrated, but please don't contribute to ignorance about a diagnosis that is used on a huge range of children who didn't ask to have it.

This. And OP, the victimization in your post is also over the top. What do you think parents of kids with all types of SN are doing right now? Get some coping mechanisms going, get your kid an actual diagnosis - and I am sorry, but if it is this bad and he is this old, take some blame for he delay here - and get behind it. Also, we don't tolerate using diagnoses as pejoratives on here, even if it coming from a place of lack of education. Now you know better. Do better.

[Anonymous]

Alright. Not welcome. Got it. I feel the way I feel, and I’ve been trying to get help for myself and my kid for YEARS. It’s been round and round and round and no one has EVER until now thought that my child’s issues were anything other than shitty parenting. Guess they’re all right. I still hate autism - my kid definitely has it but diagnosis takes FOREVER once you have a direction, and I hate that my kid has it. Why? Because parenting him is HELL and always has been. Why? BECAUSE NO ONE BELIEVES HE HAS ISSUES. Because they all think it’s “inconsistent parenting” or “because Mom isn’t married” or “because mom sucks at parenting”. I’ve been trying to get someone to listen to me about this kid FOR YEARS. Since he was 2 or 3. But no, I was you g when I had him so I’m a terrible mom.

I’ll find support somewhere else.