Parents grieving autism

Post Reply New Topic

Galway is absolutely beautiful.

Dun Laoghaire (pronounced Done Leery) used to be Dunleary until 1821 when it was renamed Kingstown. In 1920 the name was changed back and given the extreme Irish spelling treatment for good measure. Now no one but locals can pronounce it.

I don't get why they have to grieve. Yes, this condition creates limitations, but grieving this condition is like grieving their kid. They should find a way to make this person live the best life possible

Just had to respond to this, because I know the exact feeling. Even though I only consider myself borderline autistic, and have had decades to develop social sills, there are still times when I watch people I know having a conversation and the contrast between their animated conversation and my own awkward efforts really hits me hard. It can make me quite sad for a while, and upset about being on the spectrum.

I don't know if this is something you should tell your daughter or not, but my personal opinion is that people with ASD are never likely to learn great social skills, however hard they try. I mean, I don't want to sound defeatist, I think we can and should work on these skills, and having the self-awareness that there is a deficit is actually a good thing in spurring us to do this. Ultimately, though, we're wired up differently and it is what it is.

Personally, I don't stay sad about my conversational deficits for long. That's because I recognise that there are strengths to ASD as well as weaknesses, so for me it's not an entirely negative thing. This is the way I am and I accept that, and I trust that others will recognise what I have to offer, even if it's a bit different.

It's normal to feel a little grief over the things we cannot do, but that's not an unhealthy emotion, as long as we maintain our self-esteem. It's only a problem if we start generalising from the specific issue (such as conversation difficulties) to thinking ourselves useless or broken, or if we become angry and bitter. If you can balance the grief with recognition of what your daughter does well, I believe she'll be fine.

Hope that helps.

We are almost two months on from my daughter's diagnosis now. I just wanted to come back and post. She has settled down so amazingly once she got her diagnosis. She is now so in tune with her coping strategies, she verbalises her needs so much better and she has started to feel much more confident discussing being an aspie. She wrote a letter to her headmaster, discussed it with her teacher and this morning this is what I overheard from the next room as she was setting up her wobble cushion at the breakfast table.

My daughter to my mum: do you remember I am an aspie-girl? Well, I am also a sensory seeker. So movement calms me down and makes me feel better. So this is my cushion, I don't mind if you move it to another chair but this is mine and now you know what it is.

I still feel really positive, really proud and like she is the most amazing person in the world.

^^ Things make more sense to her now.

Exactly. I hope having this clarity with her from 8 will be as useful to her as it is for me as a mother.

Welcome!! I hope you settle in well... and that you have a good coat!

Grief is a temporary natural response to loss, a healthy reaction, prolonged grief in response to a diagnosis isn't helpful for the parent or child.
Within the context of the article the authors stance makes more sense, in childhood his parents remained grief stricken, later his newborn had a near death experience and the nurse suggested that they grieve the loss of a normal birth as a method of moving forward.
I grieved the loss of hopes I had for my future, but I developed new goals and eventually hopes, I don't think it should be different for a parent.
http://www.thinkingautismguide.com/2018 ... f-and.html

I would feel "grief" if one of my relatives was convicted of murder.

I wouldn't feel "grief" if one of my relatives was diagnosed with autism. This is not something to "grieve" over (at least for a long period of time, like Amity stated), really. It's something to adapt to. It's something where all people concerned have to do the best they can.

I think it may be specifically an issue for the parents, rather than other relatives - because they have so much more invested in their child.

From my own experience, I remember going through a bad time when my son was about six or seven. Not because of a diagnosis (I didn't know it then), but because he wasn't behaving in ways that I'd expected and hoped he would.

For example, he was quite physically active so I took him to join a kids' football (AFL) team, and he was great at it, he seemed to understand the rules better than the other kids and picked up how to kick the ball straight away. I was so proud of him. They had their first match and he refused point-blank to play. I persisted in taking him to two more training sessions, but instead of joining in he went and climbed a tree and stayed there all session. It upset me, because I wanted him to join in all the fun the other kids were having. With this and other incidents, such as the birthday party in which he ignored the other kids, I had to adjust to my son being whom he was instead of whom I'd hoped he would be.

I'm aspie too, so I really should have known better - it must be worse for NT parents, who probably wouldn't be able to comprehend at all why climbing a tree alone is better than playing a team sport.

The saddest thing is that my NT husband to this day still says that he doesn't understand our son I don't think he even got to the grieving stage, just got the stuck in a state of disbelief / non-acceptance of his difference. This happens more with Aspergers than classic autism, I think, because it can be subtle enough for the parent to consider their child "normal", but just "deliberately difficult" or "not trying hard enough". Sad, but true.

The problem is, different individuals react differently to different situations, and no one has a right to tell someone else that they should not feel what they happen to feel. If a parent needs to go through a grief process to get to the other side and truly appreciate the child they actually have, then that is what they should do, and attempts to make them feel guilty about it, or to tell them there is nothing worth grieving, are counterproductive. People feel what they feel, and feelings are always valid. A person has to accept what they feel before they can handle the emotion and move it to its proper place. Sometimes on this forum people get so wrapped up in our collective positive vision of ASD that we forget to validate normal human emotions we worry could be at odds with that vision. I don't think that is fair to parents. Let them grieve if they must; its no big deal. The goal should to help them get to the other side of it, not to invalidate the process. I just feel its something we could be more careful with.

This is wonderful. It was that way for us, too: having a diagnosis was like a key unlocking a door. Everything got better from then on. We had answers and we had a plan. We knew where to look when new questions arose. My son was so happy having a positive and rational answer for what made him "different." Sure there were still tough days and rough roads we had to travel, but holding a key in your hand makes it all so much better.

Best of luck to you both.

Thanks, it has made such a huge difference. She hasn't had a meltdown, or even come close, for the past 3 months. I have no further demand avoidance before school. We were 45 min late for 6 months, now we are early each morning. It is really remarkable and makes me hate the NHS even more for their 2 year time-frames for diagnosing children and how many girls, in particular, have to wait until their teens to get clarity. All is really good here right now! Sure, as you say, there are going to be some very challenging patches but at least now we more clarity.

You and ASDmomASDkid were both there for me with sounds minds and knowledge of the path ahead when I was at the trickiest point, thank you so very much for that.

It wouldn't be classic grief in the sense of having something/someone and losing it, but there is such a thing as ambiguous grief, which is more like the loss of a dream or the loss of something you always wanted but will never have. For example, a woman who has always wanted to be a mother and learns she has a medical condition that prevents her from doing so may still grieve the dream of being a mother, or the vision of the children she will never have. Having a child with ASD could result in ambiguous grief because, although you still have the child, your vision of what their future looks like may change. Depending on severity/comorbidity you may have to adjust to the idea that they will not get married, have children, live alone, go to college, etc. If it's mild ASD I don't know that there would be a lot to grieve.

This might seem like a weird parallel, but let's say you buy your dream house. It's everything you ever wanted. After about a year there, it turns out you just can't afford it. You have to sell it and move. The house you move into is fine. There might actually be some things you like more about it. But there are still things you miss, things that a lot of other people have in their houses, and sometimes you wish you had those things too. You still aren't homeless, and you are thankful for that. You try to appreciate your house for what it is, and usually you can do so. But the sting of seeing, or even knowing, what you are missing still hurts sometimes.

This couldn't be further from what I think and feel. I feel like not only did I get my dream house but after a year or two I realised that it had all these secret passages that took me to all my favourite places.... and down a corridor there is a magic door only I can open which takes me to this special tower room where (despite my house being deep in the countryside) I have an endless clear view of just ocean and sky (which is my favourite thing in the world).

Now, I am that mum who is constantly having other people's kids over. I spend a lot of time going out with my daughter's neurotypical friends, our house is the house where all the sleep-overs happen. I am the one who lets them organise little parties (without occasion). So I do have lots of first hand experience of 8 year old girls. And I never ever ever ever feel like I am missing something. Quite the contrary.

Sure, my daughter might be "mild" although I don't really think that is here or there as there certainly have been long boughts of time where there was nothing mild about how it felt to be her.