Anonymous
Post 04/28/2020 15:12     Subject: I HATE AUTISM
Anonymous wrote: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.


OP, if you are here. Please call Kennedy Krieger today and get an appointment for a full psychological workup. Then call Children's Hospital and make an appt for a full psychological workup. YES, you are right, the appts will be set for MONTHS from now because of the long waitlists. But at least getting an appt at BOTH places will help you. And put yourself on the "if there is a cancellation please call me list".

And see if your son's psychologist also has names of independent psychs who can do a full psych workup for autism, ADD, ODD, ADHD and anxiety and call and get on THEIR appt waitlists.

Just doing this will help you feel (a teensy weensy bit) better.

And then be good to yourself, know that it's HARD - I truly know it. A child's behavior can turn a household upside down!
Anonymous
Post 04/28/2020 14:47     Subject: I HATE AUTISM
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.


Try dr. Dan Shapiro’s training. It’s free.
Anonymous
Post 04/28/2020 14:28     Subject: I HATE AUTISM
Anonymous wrote:If you have a child with autism and you're going around saying you hate autism, you're a bad parent. Plain and simple. Your job is to advocate and support your child. You should be working to make the world a more accommodating and supportive environment. Your child has enough struggles without his/her own parents spewing hateful words.

I hate neurotypicals!! They don't know how to follow a routine, insist on talking in codes rather than just saying what they mean, insist on variety just for the sake of it, and don't let me stim when that's a key way for me to emotionally regulate., etc. etc. That would be a really awful thing to say, right?

Don't use hate when it comes to your kids. Should be an easy rule.


This is horrible and frankly, PP, you are horrible for saying it.

If I have a child with cancer, am I not allowed to say that I hate cancer? Cancer is NOT my child, nor my child's identity.
Anonymous
Post 04/28/2020 14:23     Subject: I HATE AUTISM
There are private child counseling groups that will give your son a diagnosis if warranted and start him on medication. Usually, there's a meeting of the therapist with the kid, a meeting with the parents, the therapist talks to teachers, pediatrician, etc., then the therapist meets with the parents again to chart a plan forward. It will cost around $700-900 for these appointments. The right medication can make a huge difference in a child being available for getting help with therapy.
Anonymous
Post 04/28/2020 13:46     Subject: I HATE AUTISM
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.


I'm going to dissent about getting an assessment. It is unreasonable that your child has been in for one by now. Where have you tried to get in?
Anonymous
Post 04/28/2020 13:15     Subject: Re:I HATE AUTISM
OP, I sympathize with what you are going through. I have a son who has been violent enough to be arrested multiple times - and he's a minor. There are other things as well.

You seem so focused on getting an autism evaluation and you have all of your eggs in one basket. I don't know if he is autistic or not, but only one person in your treatment team thinks that and you've bought it hook, line and sinker.

Regardless, I don't know why you wouldn't be getting into a psychiatrist to see if some of his issues can be handled through medication. Clearly therapy isn't working an an autism diagnosis isn't going to change your situation. You still have to figure out how to deal with the violence. Also, I'm not sure I'd be picking on the issue of screens these days. Our kids had their world turned upside down and they are not going back to school anytime soon. So, you have to do something and it doesn't take that long to get a psychiatric appointment. If nothing else, next time he's violent, let the police take him to the hospital.
Anonymous
Post 04/28/2020 12:18     Subject: I HATE AUTISM
How old is your son? My brother is autistic and developed bipolar disorder - which doctors at the time told us "often" happened. (No, I don't have research - he's 35 now so it's been a while as this happened when he was 20ish).

You're right. Getting an autism diagnosis takes forever. Can you get someone to focus on what might be happening WITH the autism? I hate to say it but if you stop using the word autism (as much as I disagree with this statement, many people will assume that autism is a long-term problem without emergency issues, so immediate appointments aren't needed) and get even your pediatrician to focus on mood swings and anxiety, you might be able to get services for those issues now, and wait on the formal autism diagnosis until you get to the top of the lists.
Anonymous
Post 04/28/2020 11:07     Subject: I HATE AUTISM
If you have a child with autism and you're going around saying you hate autism, you're a bad parent. Plain and simple. Your job is to advocate and support your child. You should be working to make the world a more accommodating and supportive environment. Your child has enough struggles without his/her own parents spewing hateful words.

I hate neurotypicals!! They don't know how to follow a routine, insist on talking in codes rather than just saying what they mean, insist on variety just for the sake of it, and don't let me stim when that's a key way for me to emotionally regulate., etc. etc. That would be a really awful thing to say, right?

Don't use hate when it comes to your kids. Should be an easy rule.
Anonymous
Post 04/28/2020 10:46     Subject: I HATE AUTISM
OP, I'm so sorry you and your son are going through this. My DS has HFA (very high functioning) and there are days that I hate it too. My friend has a tween boy with autism and she hates autism as well. It is a completely normal feeling -- don't let the PPs make you feel guilty on top of everything else.

My DS was diagnosed when he was almost 11 and in the year since then, we have seen so much progress because we finally were addressing the right issues -- for us it is cognitive flexibility. I am so lucky that my DS isn't particularly combative but I know kids like that and it sounds really hard to handle.

Definitely contact your doctor and your DS's doctor to see if there is something that can help in the short term. And if your kid is like mine, the only thing that will get him off screens is to literally remove all the screens from the house.



Anonymous
Post 04/28/2020 10:40     Subject: I HATE AUTISM
Anonymous wrote:
Anonymous wrote:
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.


Y'all aren't very helpful with your offense. I have 2 kids with autism and one is really really hard. Yes, counseling for DH and me has helped immensely, as has parent training. Our family and home compared to 6 months ago is so much better, calmer, less stressed, more peaceful and happier. Even during this pandemic. But the anxiety and rigidity is still very difficult.

OP, it is still possible to improve your family, your well-being and your DC's. You can do it. Maybe anti-anxiety meds or other meds would help, maybe a change in parenting or elsewhere would help. Posting for constructive help here may help, and venting may also help.


All she needed to do was say she hates the issues she is dealing with. Hating autism is not OK and you don't get a pass because you have a kid who may have the diagnosis or may not. It is highly likely that even if her child has autism, there is a comorbid diagnosis causing the violence-bipolar or ODD or something else. Autism gets a bad enough rap in the press when every school shooter supposedly has autism even if it was never diagnoses, misdiagnosed or the mildest of a slew of diagnoses they left out.
Anonymous
Post 04/28/2020 10:33     Subject: I HATE AUTISM
Anonymous wrote:
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.


Y'all aren't very helpful with your offense. I have 2 kids with autism and one is really really hard. Yes, counseling for DH and me has helped immensely, as has parent training. Our family and home compared to 6 months ago is so much better, calmer, less stressed, more peaceful and happier. Even during this pandemic. But the anxiety and rigidity is still very difficult.

OP, it is still possible to improve your family, your well-being and your DC's. You can do it. Maybe anti-anxiety meds or other meds would help, maybe a change in parenting or elsewhere would help. Posting for constructive help here may help, and venting may also help.
Anonymous
Post 04/28/2020 10:29     Subject: I HATE AUTISM
Anonymous wrote:
Anonymous wrote: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.


OP, you have to break this cycle of anger and victimization you have going on. Having kids is hard. Having kids with special needs is extra hard. Its also very hard for your child. What can you do now -

1. find him a therapist
2. talk to a psychiatrist re his symptoms and explore med ideas
3. attend a virtual parent coaching like Dan Shapiro class right now.
4. spend 20 minutes time in with your kid every day
5. read the Kazdin method


I think all of these are great ideas, except I don't think realistically OP will find a therapist to take this case on virtually. It is too complicated not to see them in person amd I doubt anyone is doing in person right now.

OP, you are free to vent here and you will and have get/gotten a lot of empathy. The issue is you are using a label in an offensive way. Just say you hate the violence and the fear and all of that. Most kids with autism are nothing like what you describe.
Anonymous
Post 04/28/2020 10:21     Subject: I HATE AUTISM
Anonymous wrote: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.


OP, you have to break this cycle of anger and victimization you have going on. Having kids is hard. Having kids with special needs is extra hard. Its also very hard for your child. What can you do now -

1. find him a therapist
2. talk to a psychiatrist re his symptoms and explore med ideas
3. attend a virtual parent coaching like Dan Shapiro class right now.
4. spend 20 minutes time in with your kid every day
5. read the Kazdin method
Anonymous
Post 04/28/2020 10:12     Subject: I HATE AUTISM
Anonymous wrote: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.


No surprise your son has issues after reading your posts. How would you act if your mom said she hated a core part of your identity? I'd probably try to hide in screens all day, too.
Anonymous
Post 04/28/2020 10:10     Subject: Re:I HATE AUTISM
Dear op. So sorry. I think dealing with violence has got to be so tough. You home stops being a safe space and so you are caught in a constant state of high alert. That is soooo hard. Please ignore the folks who condemn your vent. It is important to acknowledge the pain and loss to be able to bear the load and find joy in life. Negating difficulties does not make them go away/. Feel your feels, and then take a step back and see if there is anything you can do to help you deal with what is a long term very challenging situation. The constant stress will not go away- your brain and body need supports. Yoga, mediation, your own therapist. We can’t parent alone we all need support. Big hugs.