I HATE AUTISM

[Anonymous]

Anonymous wrote:Autism is awful for our family. I wish there had been a screening test. I bet one day there will be.

In my case, the screening test was my then-boyfriend's "quirkiness," which got much worse after we married. I didn't know about Asperger's then, but wish I had. Parents with autism often have children with autism.

[Anonymous]

Anonymous wrote:I find that parents of higher functioning kids are the most thrown off by SN. They mourn their easy/non SN life. Those of us with kids who have profound needs let that ship sail tears ago.
I really wish we could divide SN parents into gen education & severe & profound. One group needs the resources & supourt they Are not getting... because they are potty training non verbal 8 year olds. And the other group takes the resources so they can go back to ‘normal’.

You get that special needs don't fit so neatly into these buckets you have set you, right? Take my kid, for example. They have a genius level IQ but in a non-mainstreamed special education program. They are very high functioning unless there is a crisis. But, when there is a crisis, the needs are severe and profound, requiring significantly greater resources than are already in place, including hospitalization and residential care.

As for mourning, some special needs are not apparent until our kids are older. So while it may seem that we engage in excessive and prolonged mourning, maybe we are just on a different time line.

Finally, every kid should get the resources they need and every parent should advocate for their child to get those resources. Resources should not all go to those kids with severe and profound issue - if you could even figure out where that line would be drawn. It is always going to be the case that some kids get greater resources simply because their parents have more money and can pay for them or because their parents are better at understanding their needs and articulating what resources are necessary for their child's success.

No parent should be made to feel bad because their child is not as bad off as someone else's. No parent should feel guilty for advocating and accepting services for their child. And, no parent should be belittled because they are working hard to get their child what their child needs.

[Anonymous]

OP, I would suggest trying to get your son into music. Let him discover bands and singers that speak to him. Let him get lost in music that will help channel his angst.

Also, based on the level of anger and frustration in your posts, I am gently going to suggest that you examine your own behavior toward and with your son and ask yourself if it might be abusive. If you rant here, using the word "HATE" multiple times, I have to think you might be losing your cool with your son, whether it be emotionally or, god-forbid, physically. You need help and a few posters have offered good suggestions. I do think your first step is trying to get your victimization under control. That's not going to get you anywhere. Good luck.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

They are not comparable. Cancer is a disease. Autism is not. Autism is not something that needs to be cured.

Actually, autism isn’t so great. The world isn’t going to bend to accommodate your child. Some kids with autism end up in homes. Let’s not pretend it’s an Awesome thing to have. Some adults with autism live with their parents their entire life and never get married. Get real.

[Anonymous]

I’m the OP. Bringing this long dead thread back to life for an update.

My son does have ASD, and unspecified bipolar disorder.

2020/21 was hell for our family - 4 inpatient hospitalizations, court because of missed parenting time with the other parent (because kid was in the hospital - as soon as kid was sorta stable it was made up and then some), and in 2022 custody changed to dads house because the GAL wanted us to have full joint legal custody and that meant that I wouldn’t be able to consent to med changes without agreement of both parents - and dad is in denial about our child’s ASD/bipolar so doesn’t follow through with the necessary therapy recommendations, etc, and wants to wean him off meds soon.

Until we had an actual diagnosis in hand, every provider (including the hospitals) blamed my parenting. They said I didn’t have rules in place that were consistently enforced- when I responded that yes, I did, and I was tired of my child trying to push me down the stairs/punch holes in the walls/break doors when I enforced the rules, they didn’t believe me. Psychiatrists wouldn’t treat my child without a diagnosis (in part because “there are no problems reported at dads house” because dads house has always been the fun house where there are no rules and no chores and zero non-preferred activities).

It took hospitalizations to get my child on medication, which was then a game of whack-a-mole to figure out which ones helped, and what dose was right. Because my son is now 14, the teens years won’t help with that.

I still hate what ASD has done to my family. I still hate that parenting my child has been so awful. And on Mother’s Day weekend, I hate celebrating being a mother. I’m in therapy (which parents with ASD/bipolar kids aren’t? It’s necessary just for functioning), but it won’t make me happy about parenting. I am glad that my child is stable, doing better (sadly he still has no friends and that will probably remain a struggle his whole life) and that him living with his dad seems to be…acceptable for now. He won’t be coming back to live with me, so hopefully by the time dads family is worn out he’s ready to be independent.

[Anonymous]

Wow, this is a lot OP. Thanks for the update.

I'm glad your son has a different space to live in, and you can get some peace.

So many of these parents who say their kids have autism have no clue how bad it can be.

[Anonymous]

OP, thanks for the update. And while living with his dad may or may not be the best for your DS (or his dad), it's good for you.

2020 was lousy for us but not nearly as bad as it was for you. But just wanted to say, there are strangers out there on the internet who hear you and are on your side.

[Anonymous]

I have a son who has bipolar along with other issues. I’ve lived through hospitalizations, holes in the walls and violence towards me. But one thing I didn’t have to live with is a coparent who interferes with treatment. Having a supportive spouse makes things look entirely different. I’m so sorry for what you’ve been through and I’m glad you’re getting a reprieve and have some peace.

[Anonymous]

OP, I am so sorry you are going through this. Bipolar is so hard as an illness itself but also the fact that many doctors and therapists will not diagnose it till late teens losing years of needed treatment/medications.

[Anonymous]

I'm sorry, OP and others who are in pain. My child is ADHD/HFA and that's hard enough. I have two little neighbors who are more severely affected.

[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.

Is he highly gifted? Maybe he’s lonely.

[Anonymous]

Do you think the dad likely has the same?

Do you ever read that psychologist Dr Kathy Marshack went through the same thing with her ASD/ bipolar Ex and ASD / bipolar daughter. The dad and adult daughter live together and don’t talk with any other family members or friends.

Anyhow her books are very helpful for NT/AS parenting or coparent. She specialized in that after discovering so many in the spectrum in her nuclear family and even backwards to her own mother.

[Anonymous]

OP thanks for the update. I'm wondering if your DS was always a more difficult child to raise or if there was a turning point?

[Anonymous]

In my case with spouse and oldest child w it, my spouse got diagnosed first while we were married.

I think the normal increase in responsibilities bring to light more of the symptoms, more severely, more frequently and then either good coping or bad coping methods (lashing out) take over. So this could be any age- middle school, high school, college, having a kid plus working.

It’s still hell. I’ve “lowered the bar” and “dropped (so many normal) expectations”, and “stopped asking them to do anything” that it’s pretty detached at this point. Not that either of them realize it; they don’t need or want the social interaction or responsibilities anyhow.

[Anonymous]

Anonymous wrote:OP thanks for the update. I'm wondering if your DS was always a more difficult child to raise or if there was a turning point?

So for me it was environmental and they took the easy way out and copied the poor behavior and habits of the adult dad with adhd/asd/bipolar.