"So I just need to accept I have an autistic son" :(

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I think there is more to this than most people usually give credit.

I think people, in general, are uncomfortable when they don't know what to say, or sometimes more importantly, what not to say. Can they talk about all the milestones their children are making? Will that seem like "bragging" or "rubbing it in"? Will it hurt your feelings if they share that their kid is doing really well at something? After all, moms of all kinds are proud of their kids. But it must feel very awkward to share your pride with someone who may never experience that same milestone being met.

What are they supposed to do when they plan an outing that will not work well for your child? Is it OK just not to invite you? Or should they invite you and hope you don't come because they know it will be a negative experience for everyone involved? Or should they just not plan things that you can't attend? But what if their kid wants to do something that is not appropriate for your kid?

Then there is the fact that you have to be constantly on your toes about what you say. I have a friend who cannot have children. I swear every time I complain about something that my kids did or didn't do, I immediately feel like poking myself with a hot dagger as I am sure she would rather have kids who misbehave all the time or fail to miss all milestones than to have no children at all. I am sure my friends with typically developing kids have felt the same way before when complaining about stuff.

This is not to minimize the sadness of falling away from one's friends. But I do think that it is a "kinder" explanation than your friends thinking your bad parenting will wear off on their kids or that your kid's behavior will wear off on theirs.

Two of my sisters have SN kids (not autistic). They have both asked "how do you do it?" Not in the "OMG, how do you do that?" kind of way, but more in the..."I want to do it...can you point me in the right direction?" kind of way. My answer is that you love your kid with all your heart, you advocate and protect, while not allowing what other people think or say to distract you, and you never give up hope. All of our kids (mine and my sisters) have issues that will affect them for the rest of their lives. But each of us believes with every cell of our beings, that our kids will continue to grow and develop and that we will be able to figure out what ever needs to be figured out and deal with whatever needs to be dealt with. I believe the three of us were chosen to care for these precious little souls. And that is what we will do.

Not everyone gets to the place of acceptance by following the same path or the same timeline. Everyone has that "breaking point" where they realize that things will never be the way they dreamed of when they felt that little baby kicking in their womb or anxiously awaited their birth through someone else. I think this is probably even more true for parents of kids who are not high functioning or however you would want to say it. I mean...when they are 2, 3, even 4 years old, there are plenty of stories of hope and plenty of kids who end up "ok" despite being "different." My kids are two of them, which makes me have some degree of difficulty knowing the right thing to say to parents of kids who are more affected. When I offer hope to newbie parents, for example, I am doing one of two things. I am either helping them stay positive and focused, so they can get on the "right track" in terms of how they see their kid, or I am selling a lie, because not all kids end up like mine.

TheSperg, your wife is at a critical juncture, and it is not bad that this is happening. It is just the next step in coming to terms. With support and love, she doesn't need to stay in this painful place for long. It is admirable that you want to help her. I guess my one piece of advice is that now more than ever, she needs to be loved unconditionally. Knowing that you love her and support and respect her will help her get through to the other side.

Yes I think there are several aspects that contribute to the "abandonment" from family and friends, from them not knowing what to say,us not having much in common anymore, etc.. I think it's something that a lot of parents (but especially mothers just because they tend to be the ones doing most of it, of course not always) experience if they previously had friends. My husband didn't get that because he never had a lot of friends to begin with. When I look at it that way, I should feel lucky that I ever had friends!

Nowadays I find that we are actually actively avoided by people. I think people are legitimately scared of my older son. And as sad as that is, the truth is that were he not my son, I probably would have been scared of him too. So I'm not really in a position to judge them as a "bad person" (I'm sure they're not) but that doesn't make it less hurtful and lonely either. (Note: none of this means that I do not also acknowledge that my kids have gone through hard stuff).

This thread is really depressing for me to read. When I look back on my childhood I know I drove people away because of my behaviour. Mainly my father who left when I was four.

I am wondering what it is that is so disappointing about having an autistic child. And for that matter why we are found to be so unpleasant. Perhaps it's ToM and the resulting self-centered behaviour.

So, Sperg, it sounds like your wife is disappointed with her child. But she can't know what his life will be like.
A huge obstacle is people's ostracism of us. If people were more accepting, we wouldn't have that added hurdle.
Do you think she views your child's autism as a failure on her part?

Note: if my use of the word "we" is found offensive please note that I am aware each person is unique and only use the term in a general sense.

That must be very painful and difficult. I am so sorry this has happened.

I don't know that I would say it is "disappointing" to have an autistic child. My children disappoint me no more than I imagine they would if they were NT, and in general, I do not find them disappointing at all, though some behaviors are disappointing.

If I am being completely honest, though, although I would never trade my kids as they are a vital part of my life, I do have to admit that at times, they have made my life more challenging than I was prepared for. Especially when they were younger, they were very time consuming and I felt downright exhausted most of the time. When you are .THAT. exhausted, sometimes it is hard to find the strength to keep soldiering on, especially when you realize that you may never get a break. Parents of typical kids can anticipate their children becoming more and more independent and one day actually becoming independent. For some parents of kids on the spectrum, this isn't a given, and for some, it will never happen. I don't think that everyone is cut out for it...or at least they don't have whatever it takes to learn to get through it. I feel like what I am about to say is harsh and critical and I hope I do not offend anyone, but IMO, if an adult leaves a SN child, it is probably more of a negative reflection on them and their ability to deal with adversity, than it is a reflection on the SN child.

It is not your fault that your father left. I don't need to know anything about you to know that because there is NOTHING a four year old can do to be responsible for their father leaving.

Well maybe there were other reasons. He never accepted my autism though. I'm not sure what he made of me but burden and disappointment were apparent.

Reading your post about the area where you live, I would seriously consider moving if I were you. The support and understanding we've gotten in our local community has been so HUGE for us, I cannot begin to imagine life without it. There are places that are more ASD friendly than others; being in one of those would make so many things easier for all of you.

That represents a shortcoming on HIS part, not yours. A 4 year old is under no obligation to understand his/her parent's perspective or to try to accommodate his/her parent's needs. I can't say the same thing about the parent of a 4 year old.

It sounds like your wife is just in the beginning stages of, yes, acceptance. But maybe she needs to identify what she needs to accept more clearly- not that your son is "ret*d", but that he is fundamentally different than most kids and that will mean a completely reality for your family and a different path to his future. And it will be difficult. But there will be lots of good things too. Has she read about autism? Maybe she needs more information about what difficulties and challenges you will face and also what abilities and skills your son has and can develop.

As someone else said, grief has many stages. Like it or not, when most people have children they also have typical ideas about what their child will be like, and have hopes and dreams about what the future holds for their family and their child. The reality can be pretty different when you have a child with autism (or any difference or disability). And it can be extremely difficult. It takes time and effort to let go of the ideas that you've held for a long time about about having a child and having a family, and even about the trajectory of your own life/career. I'm still in that process after two and half years of knowing for certain that my boy had ASD.
I found acceptance was a little easier for my husband as he wasn't the one seeing other NT kids all the time or the one dealing with the challenges 24/7. And his career trajectory and many hours of his day are not been as affected as mine. But he has hard moments too.

It is doubly hard when you are surrounded by people with deep misunderstanding and misinformation. We live abroad too in a place where until very recently, anyone with ANY disability was a shut-in that the family never mentioned. (It's rapidly changing here though.) Is there any western/expat community where you are? You'll find more acceptance and understanding there, and perhaps even information about local support. For me, living abroad where we do, I do well in the relative social isolation. I speak little of the local language so can easily ignore passing comments strangers might make if they're not speaking English! Another advantage is that we stick out as odd already, so we're used to any attention we might get for being different.

I really wish you the best and I hope your wife comes around. Keep pointing out the positives, I think that's important. Also give her the time and space she might need to feel sad and angry. One thing I think someone mentioned as well is that you encourage your wife to try to enjoy your son as he grows and experience the joy and fun stuff that comes with being a family and having a kid and to do this you can't just focus on hardships and on what he isn't or what he might have been or how things might have been. Sometimes I look back on times with my son and wish I had been less worried about him and everything and been more present to just enjoy the great person he is. I still struggle with this, but I try to be conscious of it. They grow up so fast.
Good luck.

TheSperg

I agree with others that have said your wife seems to be at a critical juncture in her acceptance journey. I think its the depression phase of grief after the bargaining phase has proved futile. I think the clinging to the hope that your son will talk and that pecs is a waste of time is the bargaining bit and now that it is sinking in that this is probably not the case then the depression phase will quickly follow.

I don't know what to suggest to help other than to say that you need to not judge her. Even if she is saying some stuff that is hurtful or negative at this stage you just need to support her through it and help her come out the other side of the depression phase. Sadness / Depression often spills over into anger and frustration so there will probably be some times when she is horrible to you but again at this stage getting cross back is inadvisable. Basically I guess I am saying is stay calm, support her and trust that she will get there to true acceptance in time.

I want to offer you a little bit of support and, maybe, explanation.

First of all, you are not to blame for your father leaving. The fault is his. I know exactly how rough a four year old can be, but it is the parent's RESPONSIBILITY to figure out how to deal with it. If someone cannot accept that things might not be shiny and perfect, they should not become a parent.

Second, while I know I am stepping into dangerous territory here, I will make an attempt to explain some of the things that can make SOME ASD individuals difficult to be around. Emphasis in on the SOME; I've been around enough different ASD kids to know that there are NO universals, and some have so many delightful gifts that no one cares if they also do one of these things. These are all things that as someone gets older they should hopefully have the ability to improve on, so the point is not to criticize, but to realize that if you want to live in a world of people, sometimes you have to prioritize things that you would not normally choose to.

1. The hygiene issues can be huge. There is a reason the poop smearing image is used so often: if that is your child, it is an incredibly difficult thing to live with. But there are also the smaller ones, like not wanting to bath, not wanting to use deodorant properly, not caring about acne or hair oil, letting a nose run all the time, and so on. For many people, these aren't superficial, they are neglects that truly offend the senses and make someone extremely difficult to be around. Think of your own sensory issues, and consider these items in that vein. Pretty much every parent here has had to go through some version of a major hygiene issue with their child. Since we signed up to be parents, it is our JOB to figure out how to not to let it get to us, but other people? They don't have that responsibility.
2. The lack of self-control, and ability to act unpredictably can be frightening to people. When my son was ten, he got upset and went to a corner to try and calm himself down. A girl at school, trying to be nice, went over to try and help him. He physically struck out at her; that is not a reaction any child is prepared for, and not one their parents will stand for. We were lucky - she was not hurt and is truly was an understanding young girl. It could have turned out much worse than it did.
3. Going back to the above example, the inability to hold off the need to self-calm until there is a private time is also something most people are not prepared for. Most people don't change from happy to melt-down in what appears to be a blink of an eye. To see it happen in someone else is, as a result, frightening: people don't know what to make of it, unless they've personal experience or training with it. That young girl knew me well enough to come to me for explanation, but rarely is that even possible. So, people stay away.
4. As a parent, the whole area of stress and meltdowns is really trying and exhausting. It is our job to figure out how to handle it, and more importantly to teach our children protocols for preventing meltdowns, but if you have a child who hasn't learned before getting too large or strong for you to be able to physically stop them, you can and will get hurt. The emotional dynamic of loving someone who can and does physically hurt you on a regular basis can easily become destructive for everyone involved. Again, handling all this appropriately is our JOB, and not the fault of the child, but some parents are better suited to that job than others.
5. Inappropriate remarks can be extremely hurtful. My son is ASD, but also willing to work on improving his mouth filter, and there are several other ASD kids in his school. While my son works hard to get the feedback he needs to keep himself from hurting others, and also to help the ASD kids who struggle more with it more than he does, as he says, it is really difficult to watch someone hurt everyone you care about time, after time, after time, without any apparent effort to improve the situation, no matter how many times you talk to them about it. There are only so many times you can ask the friends being hurt to be understanding about it; their hurt is real, too. My son is in an extremely understanding and accepting group of kids, but there are limits. Just because a kid is NT, doesn't mean they have all the answers, either, and solving these conflicts can be really difficult for everyone involved.

The thing is, no one has to allow themselves to be defined by their worst traits. Yes, it is a challenge to overcome assumptions and have to show people what you are worth instead of it just happening organically, but everyone in life faces challenges, some more than others, but it is helpful to remember when frustrated that no matter how things appear, NO ONE gets it all.

Thanks! I'll try not to blame myself.

Obviously smearing poo is something that needs to be gotten over. Nts seem to go to the other extreme though. Almost worshiping their bodies. I've always found that to be disconcerting.. True. I was having lunch with an autistic friend when he suddenly started banging his hands on the table. Then he lept up and went to the restaurant's front window and banged on that. Turns out he saw someone he knew and was trying to get their attention. It was like he was having some kind of fit. I don't understand why people have a hard time with this. True.I've met a few autistic people and they seem to have thought that the truth of a statement determines it's appropriateness. I'm not sure why so many of us make this mistake.

I also found this a little depressing and I very much appreciate the insight and thought shared here.

It's given me a lot to think about and made me feel a bit better about things.

Thanks.

This is a little late but I think maybe what her sadness and grief and frustration are saying is that she wants you to be empathic rather than solving anything, to say you know how she's been working really hard and it's discouraging for you too when you see your son struggle.....you don't have to agree with her that things look dark, but I think she wants to know from you that you see she feels sad and discouraged and that you are there for her and your son and together you will all find a path, And wants to hear this in words. Especially if she does not have much support from family and friends.

To me, it seems like your wife is just facing her own dark feelings head on and really feeling them, which is necessary to achieve acceptance. I don't think these feelings, at the moment, reflect what her future feelings about having an autistic child will be like. It reminds me of that "Welcome to Holland" piece of writing. She seems to be in the stage where she is still confused and upset that she didn't go to Italy as planned, but it doesn't mean she will not enjoy Holland. She just needs to get past these feelings.

I agree that it does not help that she is surrounded by judgmental and unsupportive people. I hope she can find new, more accepting people in your community.

By the time I learned of my son's diagnosis, I was relieved because it was just validation. But, I know some parents who are now delighting in their autistic children who had similar feelings as your wife when they first got the diagnosis.