Advice for distant grandparents of an ASD child
December 3, 2021 2:05 PM   Subscribe

My grandson is 4 and has been diagnosed as ASD1. We live 8 hours away. We have sent 5,000.00 this year, and it's all we can afford. What else can we do?

We saw them for a few days in the summer and found him a typically busy, charming, active boy obsessed with dinos and trucks. Our 2 boys were the same.
But the parents tell us he is quite difficult, and his diagnosis is unequivocal. They've spent thousands getting diagnoses and therapy, already.
We are accused of being dismissive and unsympathetic due to our last conversation when I admit I was too excited to be going to see them at Xmas, to listen properly.
We have apologized but I feel it's not going to be enough.
What can we do from a distance and when we are there? We intend to give them a day off, and hopefully an evening out without us. But what about after?
posted by Enid Lareg to Human Relations (19 answers total) 3 users marked this as a favorite
Based on what you’ve said here, showing that you are not dismissive and are taking the diagnosis seriously may be the most important part.

Read books or watch documentaries about ASD and share that you are doing your learning.

Do research on whether there are specific toys or clothing designed for kids with ASD - other mefites likely know more than I do, but I know some people for example are very sensitive to seams and tags and there are brands that cater to this now. $50 spent on something that shows you did your research may mean more than a $5k check, in terms of your relationship with your child and in-law.

Ask what you need to know for your visit. Are there special ways you should handle arrival? How can you best support the parents when hard moments arise? Anything you should know about how to interact with him? Any reading they recommend in advance?
posted by amaire at 2:09 PM on December 3, 2021 [5 favorites]

Honestly? If you want to make a powerful difference that will last for decades, move close enough that you can offer regular, nourishing respite care. Even if you rent out your current place and rent a place nearby them, it will help. Too many autistic kids wind up with trauma because our society isn’t set up to let parents get regular, predictable respite. You don’t have to do this, but there are consequences. If you literally cannot do this, don’t feel guilty. Capitalism sets up awful choices for us. Thank you for your wonderful caring approach!
posted by The Last Sockpuppet at 2:12 PM on December 3, 2021 [9 favorites]

There's been an incredible shift in autism diagnosis and in psychological intervention in general in my lifetime (and I am guessing that you are slightly older than I am!) I sense that you feel that he doesn't need the diagnosis, but an autism diagnosis doesn't carry the same sort of stigma that it once did and it doesn't just apply to people who are nonverbal or have incredible difficulties functioning. He should be able to lead a full, happy life, just with the right therapy to help him through.

Personally I would ask your son if there was a book that he'd recommend to learn more about autism in children. That should help you learn more about the therapy that he's going through and about interacting with your grandkid in future.
posted by kingdead at 2:25 PM on December 3, 2021 [10 favorites]

A non-financial way to contribute is to help them navigate the system. The treatment system for autism is an absolute mess and very confusing for even quite savvy and educated parents. What's the difference between OT, PT, ST, ABA*, ESDM, RDI, etc.?** What does insurance cover and what does it not? How many sessions will it cover? What paperwork/documentation does each provider need? If you're capable of doing any of the research and legwork on this process, this would be an amazing help for the family.

*ABA is the most common recommendation for autism but is deeply flawed and many autistic adults have spoken out about how harmful it is. Probably one of the best things you could do for your grandson is to read up on this and provide some education for his parents in whatever way you can without making it into a confrontation on how they help their child; you will know best if/how this can be done.

**OT = occupational therapy, focuses on sensory and motor differences and daily living tasks, good for kids with sensory issues or general clumsiness; PT = physical therapy, good for kids with balance issues, core strength issues; ST = speech therapy, good for kids with trouble communicating or understanding language; ABA = applied behavior analysis, see above; ESDM = Early Start Denver Model, has roots in ABA but some practitioners don't use the ABA parts and focus on emotion regulation and relationship development; RDI = relationship development intervention, focuses solely on the relationship between parent and child but is shown to have significant positive effects on all areas of a kid's life, but unfortunately rarely covered by insurance.
posted by brook horse at 2:46 PM on December 3, 2021 [3 favorites]

I don’t have experience with ASD but I have a 2.5 year old and parents that live too far away to see regularly. One thing I’ve found is that my parents have forgotten how to engage with the day to day care of a young child, and that often causes frustration for me. For example, my mother will tell me she wants to talk to me over the phone without the toddler interrupting, when I’m alone at home with her. That’s not possible and she doesn’t get it. The rare times we see each other in person, my parents offer to help watch my child, but that means sitting on the couch and chattering about family gossip without engaging with my child, and that puts the burden on me to entertain them and her simultaneously, which is worse than no help at all.

And then they say things like “she’s so much fun! how can you ever tire of her!”

I’m not saying you do exactly these things, but your comment about being excited at Christmas and them saying you were dismissive made me wonder if there’s a bit of that going on. Me, personally, I would love if my parents would take the effort to play with my child, not so much to decrease my burden when they visit (because it’s rare anyway) but so they can bond. Their reluctance to get out of that adult comfort zone is frustrating.
posted by redlines at 3:09 PM on December 3, 2021 [25 favorites]

Listen. Don't judge. Don't comment. Don't suggest. Just listen. And then after that, listen some more. If you feel the need to say something, one of these could work:
"That sounds hard."
"That sounds frustrating."
"What can I do to help?"
"What do you need right now?"
"I'm very impressed by you."
posted by Toddles at 3:17 PM on December 3, 2021 [16 favorites]

We saw them for a few days in the summer and found him a typically busy, charming, active boy obsessed with dinos and trucks. Our 2 boys were the same.

This feels dismissive to me. You describe your grandchild as being "typical" and "the same" as your two sons. Maybe it would be better to reframe this a bit. Your grandson, who has been diagnosed with ASD, is busy, charming, active, and obsessed with dinos and trucks. All of these things are neutral pieces of information and don't need be in contrast with each other.

I don't mean to suggest you meant to put it that way, but maybe your child was picking up on that too? Did you question the diagnosis, or how they spent on it? You have a much longer time as a parent, but they are experts on their child.

So, trust them, listen. Do a lot of reading before you see them. Ask them how you can support them. Ask them what would be helpful. And then don't push back. Do it, and believe them.
posted by bluedaisy at 3:25 PM on December 3, 2021 [6 favorites]

We are accused of being dismissive and unsympathetic

If the parents are telling you how hard things are and you respond that he's a typically charming little boy, you might mean that in a supportive way, but it is dismissive. My mom prides herself on always focusing on the positive. It's toxic to have a parent tell you how fine things are when they aren't.
posted by Mavri at 3:34 PM on December 3, 2021 [18 favorites]

Read a lot about autism by autistic adults. Then approach your own kid with compassion, curiosity and humility. Let them know you want to be supportive but you don't know how, and show you are open to learning and hearing directly from them and the kiddo.

Good on you for your good intent and effort to connect.
posted by latkes at 3:47 PM on December 3, 2021 [2 favorites]

The comment about your kids being similar makes me wonder if your adult child is identifying some autistic behaviors in themselves or their sibling, and is having some feelings about the fact that their own difficulties were dismissed instead of being identified and supported early. (Autism sometimes has a hereditary component, and parents getting a diagnosis after their child is diagnosed is an experience I've seen with several friends.) It's something to consider, if you do end up reading about autism.

One thing I would suggest is to ask them what they'd like and listen to those answers. They may not want to have an evening out but a sleeping in instead, for example (when my kid was little, this was my only desire). Or your grandson's decompensation after maintaining "typical" behavior during an unusual situation may not be worth the fallout, but having a meal prepared for them would ease their load.
posted by tchemgrrl at 4:35 PM on December 3, 2021 [8 favorites]

If you are going to see them at Christmas, you absolutely should ask them in advance about schedules, gifts, Christmas carols, foods, and anything else that might cause their son to have a meltdown. If they say, "please come between 8 and 9 and do not bring any gifts or use your phone or speak loudly," you might think that's crazy but it's what they know to be necessary to prevent a really frustrating situation. Then, follow the instructions to the letter, and don't complain.
posted by luckdragon at 5:08 PM on December 3, 2021 [11 favorites]

I think it's great that you're asking this question at all -- a lot of relatives wouldn't bother -- and I am sure you haven't permanently screwed up your relationship with your children or grandchildren.

While ASD is a more common diagnosis than it used to be, it's still very heavy news for the parents. It probably came off as particularly tone deaf to yammer on about Christmas when your child was sharing the Big Important News. So if I were you, I would take the time to apologize again and say something like, "I am so sorry I couldn't stop talking about Christmas when you were trying to share with me about Grandson's autism diagnosis. I care, I love you both, I want to learn more."

But here's the thing -- if your grandchild's evaluation was anything like my daughter's evaluation, right now your grandson's parents are up to their eyeballs in sorting through therapy recommendations, figuring out what the preschool/kindergarten situation is, filling out form after form after form for service providers. (That's on top of the daily parenting grind and the challenges that come along with parenting an autistic kid.) They don't have a lot of time or energy for holding your hand through your feelings and education about ASD. There's a lot of good information about ASD on the internet, lots of books, etc. That said - your grandson is an individual kid, not a packaged diagnosis, and he has a personality and interests. So you can connect with him, grandparent to grandchild, which is good for both of you.

Regarding educating yourself, I feel like a lot of introductions to ASD paint a particular kind of picture that may or may not fit your grandson's particular expression of ASD. So don't get hung up on "but I saw him play like a 'Normal Child' during that one visit!" But don't be offended if your son and spouse don't want to get into the nitty-gritty of the justification of the diagnosis with you. It is very hard to talk about the details with people who view the diagnosis doubtfully.

Respite care is a huge thing and if you are in a position to help provide it, GO FOR IT. I think a lot of people ages 50 - 85 vastly underestimate how hard (and expensive) it is to find casual childcare for evenings out, etc, this century. It is tremendously harder for parents of autistic kids. In theory my husband and I could afford to pay a babysitter to watch our kids a few times a month so we could have some adult time, but it hasn't worked out for our daughter to have an 'average' babysitter. It's only been successful when we paid a premium to hire a graduate student studying to work with autistic children.

But seriously, just keep connecting with your family as individuals whom you love. That's the most important thing.
posted by stowaway at 5:32 PM on December 3, 2021 [8 favorites]

Yes to many things here, but particularly luckdragon's comment as it relates to the very near future. Things like that should be understood as the autistic person's entirely legitimate access needs, just as if he used a wheelchair or had substantial allergies and they needed to pick compatible outings. The more you can internalize that, the better.

In general, some autistic children/people certainly do behave very differently among their immediate family versus anyone else, including grandparents. The busy, active, charming child you saw is very much real, it's just not the whole story. In all likelihood, the parents carefully planned that time with you to help things be that outwardly easy. They may have even deliberately accepted extra "difficult" times with/for him in exchange for those hours of happy play, because they knew they'd be able to help him through it privately and that way he could have that nice time with you. I say that not to make you feel guilty or anything, just to show a bit of the "behind the scenes" stuff you might be missing. If that is the case, they really might not be ready to have you watch him alone just yet, and might really appreciate an offer to pay an experienced babysitter, ideally one he is used to, to be there with you. Such a person would hopefully be able to confidently handle the "difficult" parts that you might not know what to do with at this point, which would also help give you insight into what works well for him. It might also be the case that there is no such person, between everything that's been going on in their family and the pandemic, and that the three of them really truly can't be completely apart yet.

Whatever else is going on now though, the autism is part of who he is. Treasure it as much as you would any of his other traits. Absolutely read things from autistic adults ("actually autistic" or #actuallyautistic are good search terms), and really seek to understand what is meant by saying that someone is autistic, and why it matters so much regardless of whether he's an easy or difficult child to parent.
posted by teremala at 5:35 PM on December 3, 2021 [3 favorites]

PS when you're doing research, don't even bother clicking into anything from AutismSpeaks. They are insidiously toxic and don't deserve space in your brain. If the parents send you such links, first look into what autistic adults have to say about the organization, then cautiously read the specific article(s) to try to understand what your child is trying to communicate with it.
posted by teremala at 5:48 PM on December 3, 2021 [6 favorites]

I have an adult sibling with ASD, and both sets of grandparents are well-meaning but I feel they can be very frustrating and dismissive. I don’t know how my sibling feels, and I don’t have autism myself, but I’m just sharing what I’ve observed. Based on my own experience, my advice would be to explicitly express love and acceptance for your grandson as he is. Avoid implying that because he acts a certain way when he’s with you that he’s actually probably not autistic, or that there’s something about being around you that means you’re seeing his “true” self, and if his parents were only to do things your way that he’d be “fine”. (Not saying you’re doing this, just that it’s something I hear from my own beloved grandparents that I feel makes a strong example. Like, lots of grandkids are docile and well-mannered when they’re at Grandma’s house eating cookies and not doing homework!)

+1 also to all suggestions about seeking out sources to read/watch by people with autism.
posted by chaiyai at 5:51 PM on December 3, 2021 [3 favorites]

Dealing with a fairly recent diagnosis, planning and executing all the things to prevent meltdowns, dealing with meltdowns, with other people’s expectations and judgment because your child “misbehaving” is due to your bad parenting, and on and on, all that is relentless and exhausting. Hearing people say that it’s not so bad or doubting the diagnosis just adds insult to injury and never comes from an actually informed place. Acknowledging the difficulties and realizing that you likely only see a small part of what’s going on, that can go a long way.
posted by meijusa at 6:19 AM on December 4, 2021 [2 favorites]

As someone who is not very expert in ASD but who interfaces between parents of kids with ASD and staff, I would say my tip for you is to treat the parents as you would an expert. Because they are. So the key thing is to listen and - when it’s a good time - ask some questions.

As an example:

“ how are you feeling about the holidays?”
“I’m worried about them because we’ve just finally got a routine of therapy/school/etc that works for us and now this holiday is coming and I’m worried it will be really hard on Child and a 10 day nightmare for us.”
“Hey that’s so hard. Is there anything we can do or a way to handle things like arriving that would help?”
“If you could arrive in the morning and be really calm and not demand greetings hugs and kisses…” etc. (don’t assume, I’m just pulling examples.)

Money wise, if you can’t help, you can’t. But if you can build it into your budget it can help. I know of grandparents who take on one bill for a particular activity/care/camp and do a payment plan over time, which helps the parents right away. I’m not suggesting you need to, just saying that with kids who need a specific approach, sometimes those activities are a bit pricier (because of smaller groups, more individual work, etc.), and I’ve seen a village of family come together to pay so that the parents can have the break of say, a Saturday morning off.
posted by warriorqueen at 7:04 AM on December 4, 2021

Response by poster: Thank you all so much for your kind advice. I have a book my son recommended and am slowly working through it. I see that saying "he's a great kid" could sound like "it's not a problem, why worry"

You have given me a lot to think about, and I'm grateful for the suggestions on ways to communicate that emphasize interest and care for them and their children.
posted by Enid Lareg at 7:22 AM on December 4, 2021 [10 favorites]

> follow the instructions to the letter

Yes, that. Don't presume that you, as an experienced parent, know better. Sometimes the routines in a household where someone is neurodivergent can look odd or lax to an outsider; just trust them.
posted by The corpse in the library at 3:53 PM on December 4, 2021 [3 favorites]

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