Susan's Blog

Thursday, February 3, 2022

The Particularly Painful Isolation of the Autism Parent

Isolation is a huge and common problem these days. We hear about it in the context of Covid-19 and children staying home, whether because of safety concerns, or quarantine. The autism parent, however, faces these challenges as well as unique issues particular to their child’s situation. Today my thoughts have been heavy and colored with this special form of isolation. Because I am a lonely and isolated autism parent. I always have been.

For autism parents like me, our sense of alienation and Other-ness begins at the earliest stages of parenthood, when we realize our children are following a different path than expected. Even if our children are diagnosed early on, we may not know how to help them. And therefore we don’t know how to help ourselves. Our confusion for them leads to a confusion of who we are and what we should be doing. This feeling smothered me during Nat’s earliest days and continues even now, in his 33d year of life. And although I certainly benefit from the strong support network among the champions of neurodiversity, as well as from the advocates for the severely autistic, there is nevertheless a deep sense of isolation that I face daily as an autism mom.  I bet I am not alone, and the very existence of the autism support networks, the huge autism community, the autism grapevine, proves this.

I have found in all these years of parenting Nat, a lovely young man who is into law and order, organization, and seeks out stability, I have had to change fundamentally who I am (chaotic, indecisive, inconsistent), in order to understand him and meet his needs. And that is a lonely assignment. At the heart of my task as Nat’s mom is the assumption that only I understand him. As inaccurate as that assumption may be, that has been my life for more than three decades. And I can’t figure out another way to see it.

This practically solipsist world I live in exists beyond Nat. Autism in itself is not the problem. It is the relentless worry that is. I actually think I raised Nat great. He’s a smart and competent guy and he’s well-liked. But the worry I feel for him is soul-crushing. Other non-autism parents certainly have their particular struggles – I know because I have also raised two non-autistic boys. But autism parenting has a flavor all of its own. Non-autism parents have their own burdens but mine is about being the only one in his universe who cares enough about him consistently. Aside from my amazing husband Ned, anyone else can walk away from him whenever they feel like. Teachers can try and succeed but then they move on. All – and I mean all – of his doctors know far less about autism than me. And now, he’s in the adult world, although I’m approaching 60, I still have to be as vigilant as I have ever been – which is vigilance to a point of torture – because at any point along the way Nat’s life can completely fall apart.  It’s a total house of cards. He cannot verbalize his concerns in a way that most people understand. His frustration, understandably, leaps up like a brushfire. I fought so hard for him to have both a terrific day program and at long last a wonderful group home but I do know that nothing lasts forever.

And neither will I. So I want to figure it out so badly, I want to know what I can do to be sure that he will have a good life when I’m gone. But I cannot. That is something nobody can do. We can make plans and wills and trusts – and we damn well should. We need to find people now who can take on some of our tasks – duplicate us, in a sense – for as long as possible. But the essential question of how will my child grow, thrive, and be happy and safe without me is unanswerable. And that is agony. I don’t think typical parents grapple with that horror. It’s a situation that binds me beyond blood to my fellow autism parents, but also one that is my own private hell. Our own hell.

These horrific days of disease and the rise of hatred in the world also conspire to cut us off from one another. And so in the end all I can do is keep going, without answers, without respite. I have to keep reaching out, keep explaining, and above all stay compassionate, stay human because as far as I can tell that is the only portal out of this solitary existence. To love ourselves, our children, and then to extend that love to others – that is the way we create a high functioning neural network of sorts, one that sustains us and nurtures us so that we are a little less alone.

14 comments

I feel ALL of this. Thank you.

— added by Susan H on Thursday, February 3, 2022 at 2:44 pm

Thank you, Susan!

— added by Susan Senator on Thursday, February 3, 2022 at 2:48 pm

Susan, thank you for your heartfelt sharing/writing. I’ve got the *feels*.

— added by Denise on Thursday, February 3, 2022 at 5:29 pm

Thanks, Denise!

— added by Susan Senator on Thursday, February 3, 2022 at 5:30 pm

So authentically raw and piercingly true. So glad to share the communally inspired “portal to the high functioning neural network”!!! It keeps it real…and not so lonely.

— added by Linda Cox on Thursday, February 3, 2022 at 8:02 pm

Linda, you are definitely a real friend and a community friend as well, and I really value that.

— added by Susan Senator on Thursday, February 3, 2022 at 8:48 pm

One of those oh-so-frequent nights when I feel exactly that, but am too tired to write it down. Thanks for taking the time to do so.

— added by Steve Kieselstein on Friday, February 4, 2022 at 12:07 am

Thanks, Steve.

— added by Susan Senator on Friday, February 4, 2022 at 6:04 am

Dear Susan
These sentiments are so well articulated and they resonate deeply with me. The description is so vividly and undoubtedly accurate and if I may add sometimes I have visceral reactions to my unanswered questions about my adult son’s future too.

— added by Sandhya on Monday, February 7, 2022 at 10:29 am

Thank you, Sandhya, I know you get it. <3

— added by Susan Senator on Monday, February 7, 2022 at 10:55 am

Being a parent of a 29 year old still feel the agony of what will happen to him!
Thank you for this article

— added by Fatima on Monday, February 7, 2022 at 9:54 pm

Everything that these comments say – and then some….! What keeps us up at night…. Thank you, Susan.

— added by Janice on Thursday, February 10, 2022 at 2:55 pm

Susan, I only quite recently discovered your writing via Steve Silberman’s incredible book (ie Neurotribes…). When I saw reference to ‘Making Peace…’ I bought it straight away and devoured it, FILLING the blank end pages with notes on your key points, revelations, illuminations, etc. I have worked in Scotland, UK for a local government (Council) disability support service, for some 20 years. Over a handful of recent years my department has ‘evolved’ into one seeking to specialise in the relocation of autistic adults (almost all with moderate to severe intellectual disabilities and associated behaviour support needs) from very long term institutional care in the form of locked psychiatric-hospital wards, into community-based supported living. This is a burning human rights issue here in the UK (as, I’m sure, elsewhere) and a complex process with manifold challenges. I am imminently to begin a new role in a neighbouring Council; part of a brand new team set up to enact a new legislative framework that seeks to promote and support the mental well-being of children and young people with autism, and their families. This a crisis-prevention agenda, and so timeous.
I am so grateful to have been introduced to your writing (albeit it belatedly) and for the immense and moving insights it has given me. Your blog article of Feb 3rd highlighting the particular isolation experienced by the autism parent is of immense value. Thank you.

— added by Christopher Andreas on Friday, February 25, 2022 at 6:09 am

Thanks, Christopher! That is really great to hear. It sounds like you are doing amazing work!

— added by Susan Senator on Friday, February 25, 2022 at 6:50 am

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