Parents grieving autism

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I came across an article on the Thinking Persons Guide to Autism that condoned parents grieving an autism diagnosis.

What i took issue with was the assertion that parents only grieve because they are either conditioned to or explicitly instructed to.

The author is under the illusion that grief is a mere social construct, conditioning or mindset. They seem unaware that it is an instinctive emotion that comes from within (empathy issues?).

What does the author propose, we ban grieving? Imprison those that do? I'm not sure how their article helps anything?

Well grieving is supposed to be something you do when someone close to you dies. I mean tell me this how does it help an autistic child if their parent is grieving as though they're dead rather than just autistic? That is the trouble if a parent treats it like some terrible death sentence that is going to effect the kid negatively...and might put a damper on positive growth. I mean some people are ignorant enough they don't think non-verbal autistics can hear/understand you...but yeah the non-verbal autistic child can hear/understand if their parent is behaving as though they've died and take on the hopelessness.

Why is there such “shame” in autism?

http://www.thinkingautismguide.com/2018/02/parents-lets-talk-about-grief-and.html

I don't know about the author, but nowadays whenever I find out someone has just had their children diagnosed with autism, I give them congratulations. It's one of the best news one could possibly get in life. You have to be lucky to have autistic children... not everyone is as lucky.

Now, before you say any word, please visit my YouTube channel.
https://www.youtube.com/channel/UCYc6IlHhZiloQDNYaE9WXJg/videos?shelf_id=0&sort=dd&view=0
And then, look at your hands, and ask the question: what have you made for your children with your hands? Have you drawn pictures? Have you made animation video clips? Have you built objects with building blocks? Have you assembled electronic circuits? Have you played musical instruments and created songs? Have you made posters for your children to give presentations in school? Have you hooked up your big screen TV so it can play multimedia?

Look at your hands: you have a pair of hands, so do I. The only difference is tons of stuff came out of my hands, for everyone to see.

I talked to my children, with my hands, from when they were 2 years old. And I did that at any given moment. Instead of just talking, it was always through pictures and written words (plus animation video clips, in the case of my son).

- - -

You can't raise autistic children by talking. Autistic children are not neurotypical children. You must use your hands. If the output from your hands is empty, chances are, so are the brains of your children: empty.

Autistic children are some of the brightest minds in the world. But you have to know how to raise them.

- - -

Grieving? Give me a break. I can't celebrate enough that I have two autistic children. They are happy everyday, darlings to everyone around them. Smart, too. My life is full of fun with my children. What do I have to grieve for?

The only grief I have is about how ignorant our society is. If only all parents of autistic children generated as much output with their hands as I have done for my children, trust me, they would be celebrating, too.

don't go to 'fashion of the day' places of infomercials
where there's all the trendy blabber going on, they're empty and deceiving in purpose,
(afaics) pumping around new words, centered around feels and judgementalism, construed to normalise the hive-mind dependency

I guess it could be possible to ‘grieve’ over an autism diagnosis, depending on the diagnosis.

Since my diagnosis I have become more and more depressed as I try to deconstruct my entire life and re-evaluate everything I’ve ever done. I guess that could be a form of grieving?
I’m currently in two minds as to if I’d liked to have known about it earlier - maybe I could of been better socially if I knew the reasons behind why I can’t interact with others the same way as NTs. Even before my diagnosis it could be argued that I ‘grieved’ many missed or failed relationships, as I always find myself running through those kinds of memories wondering what I could have done different.
The other side of the coin is if I’d of been diagnosed 20 years ago I might not have gone to college or university and as such I wouldn’t be the person I am now - and I wouldn’t like to change myself in general, I just wish I was better socially.

Also since telling my parents about my diagnosis I get the impression that they are upset with themselves for not noticing or not being able to provide more help (they, like myself, didn’t and couldnt have known so I don’t blame them for it).
So again, I imagine they could be feeling some resemblance to grief as they feel like they could of helped me more?

Generally though, surely a diagnosis would provide answers and ultimately make life easier? Either for the individual or for parents of an autistic child?

On a side note I have explained depression to people who have no idea what it’s like as ‘grieving with nothing to grieve for’, which a few people who have also suffered depression tell me is a very good way of explaining it.

I don’t agree that parents should be encouraged to grieve over an autism diagnosis - but, as we all know too well, the social stigma surrounding autism results in people seeing it negatively and as such the general response to ‘I’m autistic’ or ‘my child is autistic’ is ‘I’m sorry to hear that’

When people have children, they think they are producing a perfect version of themselves. Themselves, but better.

Eventually most realise that their mini me is no such thing, it is a person, with all it's own issues. Sometimes this realisation takes years, sometimes decades. They grieve for that idealised person that they thought they had created. A few parents remain deluded forever.

A diagnoses for autism is basically the end of the parents happy delusion in one go.

^^

I guess you might be right about some people.

In my experience, there is nothing about finding out my daughter has autism that has been cause for grief. I was worried when she had her 3 month burnout this autumn. I was worried I wouldn't be able to figure out the root of it. I then did a bunch of research, found this forum (which is nothing short of amazing), discovered autism was really an awful lot broader than my stereotyped view of it was (in particular with regard to females), then as we waited a few months for a private assessment I was worried I had got it all wrong (especially as GPs and school all told me I had got it wrong), I worried so much that I had misunderstood everything, and then when we got the diagnosis (about 3 months after I first started thinking she had AS), I couldn't stop the emotion pouring out, but that emotion was relief.

Autism is the missing piece. We were very close before but now I finally get those bits that were hard for me to fathom. Our relationship has never been stronger. I have never been a prouder mum. Now I know how much she has had to work, how hard certain things have been for her, I am in absolute awe of her and her coping strategies.

And since diagnosis... I am no longer wondering "oh, is that autism?" "are those actions autistic behaviour?" Now it is just her again! It is really irrelevant whether the behaviour is this or that! She is just my absolutely brilliant daughter!

I gather that quite a few "normal" people/parents have a head full of hopes and dreams and goals and expectations (fantasies, basically) about how having kids will be and what their kids will be like, even before they ever conceive a child.

Every parent (or every basically sane parent, anyway) eventually realizes that they have an entirely separate human being on their hands, and those fantasies are not going to be realized. But the keyword there is "eventually". Gradually. They get to give them up in little pieces.

I don't understand this; none of the people who raised me were inclined that way, and I'm not either. I had some names picked out from the time I was a teenager and feel a little disappointed that it seems all four of mine are going to take up their father's love of video games and none of them are going to share my obsession with fiction, but that's it. IDK about my mother. I kind of get the feeling from reading her old journals that she might sort of have been a little bit-- enough to talk intelligently about it-- enough to be somewhat at wit's end when the fantasized daughter she wanted to do girly things with turned out to be a socially awkward tomboy-verging-on-genderqueer who resembled her father and ex-husband a lot more than herself or for that matter anything gendered female-- but between choices and circumstance we didn't get enough time together for me to really absorb her view, and I'm not good enough with an Ouija board to ask.

I gather that, between the differences in how we connect with people and relate to the world and the (frequently BS) doom-and-gloom about what a child diagnosed as autistic might ultimately be capable of, finding out your kid is autistic feels a lot like that fantasized, idealized little person dying, suddenly and unexpectedly.

IDK. I remember, very briefly, grieving the loss of being able to have friends, a job, a spouse, a family (basically a life) when I was first informally diagnosed like 20 years ago now. The research is bad now, but it was HORRIBLE back in '98. It took me some time (a few weeks, a few months, I don't remember) to realize I hadn't turned into someone else and that most of the "information" that was out there was so patchy, lousy, and full of conjecture as to be completely useless.

I guess maybe it's something like that. I know it's better than it was 20 years ago. I HOPE that what they tell parents of newly diagnosed children is better than it was even 5 years ago. As recently as that, it was still much too full of "can't, won't, don't, will never." And even though a lot of that stuff is definitely not always true and might be patent lies aimed at making money for therapists and long-term carers, I can CERTAINLY see why that would throw someone who hasn't been fortunate enough to spend their whole life surrounded by autism into paroxysms of grief.

I think there might be a very big (and very necessary, and very difficult) role for us to play in, not eliminating that grief exactly (because I think it might honestly be normal and healthy neurotypical behavior to create those fantasies and feel disappointment when they don't come to fruition), but helping mitigate it somewhat.

There are many types of grieving, and many small "deaths" in life. In the case of an autism diagnosis, I believe it is healthy for parents to grieve the loss of their vision and assumptions for their child, for burying those fantasies will help them embrace the true talents and gifts of their child without any comparison to "if only" or other "what might have beens."

No one is burying the child or his reality. A parent needs to bury their false assumptions they've started to develop about the child, and the ridiculous dreams they let themselves create on behalf of the child.

I know the language can be uncomfortable, but using it can actually help NT parents move forward on a much more positive note, counter-intuitive as that might seem.

Shedding ones false hopes and dreams for a child is, of course, something all parents have to do as their children grow up, reveal their true selves, and take charge of their own futures. But normally that process is so slow and incremental that parents aren't really aware they've been going through it. When you get a diagnosis, however, you have to make the shift in an instant.

My son as an infant didn't need much sleep. Knowing that highly successful people often don't need much sleep, I extrapolated that into a vision he could be president. Well, that one needed to be buried right quick.

My son as an infant was Gumby flexible. I extrapolated that into a vision he could someday be a champion gymnast. Turns out he has loose joints, low muscle tone and disgraphia. Another vision dead and buried.

Granted, neither of these were ever realistic to start with, but its a pretty abrupt and jarring turn to realize they not only were unrealistic, but they were so far off the mark as to be ROFLOL. There were many far more realistic dreams and visions that were cut off quickly, as well. One of those was of my son as a naturally friendly and popular type; one of those "no strangers, just friends I haven't met yet" people. As an infant he wasn't shy at all, and it really dazzled people. He still doesn't really have a shy bone in his body, but the social awkwardness of the ASD keeps his interactions from resulting in easy friendships. So, I had to bury that vision of my child, too.

Removing all those silly visions and assumptions cleared the way for me to know and love my child more fully as he really is. It allowed me to change how I viewed the things he does and extrapolate much more accurately as to what those actions mean. It allowed me to see and appreciate what was really in front of me, without an NT lens. It was a positive and healing process.

Not only did I bury hopes and dreams, but I also buried parenting ideas and assumptions. We raise ASD children differently than most of us were taught to raise NT children. It was very freeing to bury all those old parenting assumptions.

I've got a truly amazing and gifted child, but like most people, I came into parenting with my own baggage and way of viewing things. Until I buried all that, I wasn't seeing my child for who he really was, and it is hard to accurately appreciate what you are not accurately seeing. I loved him and encouraged him, and saw him as talented and amazing, before, during and after the process; nothing here should suggest I did not. But I did have to go through a process in order to be in the right mental place to be a better parent for an ASD child, and I found "grieving" to be a good term for that process.

There are some really interesting posts here. Thanks to all for sharing their thoughts!

I agree that learning my child’s diagnosis allowed me to let go and move on from many of the things I thought her life would be. The word “grieving” can work I suppose. But I also understand the things I might grieve about her missing out on are things she’s completely and totally uninterested in anyway. I think the term “recalibrating” might express my own process better. All I want for my child is to be happy and I continue to work at understanding her definition of what that is and what she needs to achieve it.

Question for anyone with ASD who might read this - do you “grieve” the diagnosis? What’s making me ask this is my child recently telling me how she had lunch with a group of girls she’s working on a project with. She told me how sad it made her to see how easily they interacted with each other over lunch. The flow of their conversation was easy while she sat there formulating what to say. They were all talking about TV shows they watched (that she has no interest in) and upcoming school dance (again, no interest). My daughter just seemed so down about this, like “grieving” what she isn’t. She emphasized these are nice girls who were trying to include her, but that it made her realize how different she is. This is just one example of this ongoing awareness on her part that her life and interests are diverging from her peers.

Any thoughts or advice on this? My response was to say social skills can be practiced and improved if that is important to her. Sometimes I feel so bad that I don’t know how to respond, if I should respond. Maybe she just wants me to listen, but as a parent I always want to find a solution. I generally tell her she’s great the way she is, but that if she wants to make changes I support that too.

Any feedback on how to support her through this is appreciated. Again, thanks to all who post here. I always learn to much when I visit.

Hello flowermom

An Aspie here. Although a lot of social skills can be learnt, using them takes an enormous amount of effort, while everyone else is doing it automatically. You're basically climbing a mountain while everyone else is walking, eventually you're so tired you crack. It doesn't ever stop taking that huge amount of effort, you don't practice it until you get it and then move on to learn a new bit because none of it ever makes sense so you have to concentrate at a ridiculous level, which makes social interaction tiring and unpleasant and something to be avoided.

I'm assuming that she is at a level where if someone meets her they don't know there is anything different but they might after they got to know her, is that right? In that case one of her biggest problems will be that other people will judge her as normal. Normal women have amazing radar on all social issues. They know when someone's upset, they know what to say, they know what others want them to say, the list is endless. When a woman does not get these things right, she is often judged as being cold, uncaring, unfeeling, even nasty. I would not recommend your daughter learning to fit in too much, because the expectation of people then is that you do it all the time.

Better to find friends via special interests and remind her of the basic things of take turns to speak and when you meet someone you haven't seen for a while ask how they have been.

I think the grieving is more about what makes your kid's life harder and what will make your kid's life harder in the future than anything else.

As was previously stated, by Fluffysaurus, the life of an autistic person is usually more difficult, and of course it is going to make a person sad that they have to put up with that and possibly bullying and all the other worrying things that tend to be more likely than they would with an NT kid.

Parents of autistic kids often are spectrumy themselves, and if they had a hard time with certain things, it is of course going to make you said to know your child will probably experience much of the same, and maybe worse.

I don't think this makes a person anti-autistic to think this way. Sure, there are strengths you can build on, and coping mechanisms that can be taught -- but at the moment of diagnosis, you don't necessarily have the remotest notion of what that could look like.

Parental grief on autistic children is perfectly illustrated in this video clip.



Namely, parents (and adults in general) don't do a thing except grieving. And they grieve about a fiction. Children are the ones that have to pull themselves up. And once the children pull themselves up, then it's all business as usual for the parents. Children don't get to have any break.

My greatest fear was to have children who had a worse manifestation of my difficulties. I didn't want their lives to be a hardship for them and to see their health compromised.