Unexpected: Post-Adoption Autism Diagnosis
The Mama in this blog interview is a friend of mine. We connected over the fact that we are both raising Asian American adoptees who are autistic! She was generous enough to share a bit of her story with me. Amy and her partner adopted their son Harrison about a year ago, and did not know prior to bringing him home that he was autistic. Their story of learning and growing is below!
What was the process like being matched with your son? What conversations about disabilities did you have with your husband beforehand? Did you have to decide what you’d be prepared to take on ahead of time?
First, I think I should explain that the China adoption program is a "disabled children only" program. We went over a ton of disabilities with our social worker and agency. You have to list what needs you are open to and I think that was the hardest part, because you feel like you don't know enough about every disability. With that being said, one of the things that is discussed (although not nearly enough) is that there could be unknowns and you need to be comfortable with that. Harry was a 'waiting child' and he was being advocated for. You can have your agency match you (new files are released once a month), or you can view profiles of children that were not matched when their file was initially released and then pursue a waiting child. Our son's advocacy included tons of photos and videos and he had the biggest, goofiest grin and radiated with joy. We just kind of focused on him and not his disabilities. We did not really let the fact that we might not have his full medical picture hold us back.
I love ALMOST everything about this. The only part that made me a little sad was that last line about separating Harry from his disabilities because for disabled people, disability is such an integral part of who they are. BUT (as you will see if you keep reading!) Amy and her husband are well on their road to radical acceptance of their disabled child now.
When you met Harry, were there any surprises that you weren’t expecting?
Lots! He was much smaller than we anticipated and really quite baby-like. That was kinda fun because we got to put our then 3.5 year old in a kid carrier and just kinda baby him. He needed that too. Remember the unknowns I mentioned? Harry's disabilities were listed as mild CP, a mild vision impairment and a speech delay. In fact, he was in a program that is specifically for children with vision impairments. However, right away we noticed he could totally see everything and got into EVERYTHING. The only thing that ended up being accurate was his speech delay. Just to be sure we weren't missing anything we did take him to an ophthalmologist once he'd been home about a month, and this doctor actually said "He has perfect vision, I'm not seeing anything that points to a visual impairment. But I think he might have autism." I thought it was a little funny that an eye doctor would say that, but he ended up being bang on! My best guess is that not always making eye contact or responding visually made Harry's former caregivers think VI instead of autism. I have a friend who adopted a little boy from China when he was 6 who was thought to be deaf. Nope! Also autistic.
I have to admit, autism was not on our radar of possible diagnosis. We knew he was delayed, but that's really not uncommon for kids in child welfare institutes. CP wasn't accurate either. Harry struggles with balance because he is a toe walker. Looking back, it's silly that autism wasn't on our radar. Knowing what we know now and how common it is, autism really should have been something we became familiar with prior to adoption.
What has your experience been like interacting with other parents of autistic kids? How can that community that we are both now a part of grow for the better?
So far it's been a mixed bag of autism acceptance/advocacy parents and parents still in the fog. I think a lot of the time, the negative stigma is still hard for parents to shake even if their child has been diagnosed for quite some time. It's not totally their fault - besides organizations like Autism Speaks that spread harmful propoganda, there are so many doctors, professionals and educators who reiterate negative commentary - that autism is this burden on society rather than a different neurotype that requires understanding, acceptance and support. There are people like you and I who are listening to the autistic community and then there are parents still hoping their child can some day not be "autistic-y". It's hard because I thought there would be more parents on the celebration train. When I encounter those parents that aren't, I try my best to educate and encourage them to think in a different way and admittedly sometimes I get real salty. But it's only because I'm hoping the community can advocate for a more accepting society. Shattering stigmas around autism is now my priority. Can I say it's my bitch? If we can figure out how to tie more supportive parents together, I think we can turn the narrative around.
This was emotional for me to read. I would love to see a stronger community of parents who have autistic kids. A community that celebrates and supports autistic people and demands society do the same! A girl can dream...
If you had to pick one thing that’s helped you the most when it comes to supporting your autistic child, what would it be?
Without a doubt, listening to autistic people! This cannot be stressed enough. I can't point to one specific person because it's been cumulative. What I can say is that understanding his community, who he is and how his brain works is absolutely vital and can change everything. This is just one example: Harry has some expressive language now (31 words and counting!), however his receptive language is incredible. He can understand everything you say. Your instinct is to assume that because he can't fully converse and he quite often acts like he's not paying attention, so it can seem like you shouldn't try to explain things to him or talk him through anything. That's 100% incorrect. None of the professionals were explaining this to me. When I started talking to Harry normally, his moments of frustration got so much better. Increased communication (including your communication as a parent) decreases frustration that leads to those behaviors that are destructive and challenging. I would tell anyone who is NOT listening to the autistic community that you are doing your child a great disservice.
We both know a lot of adoptive parents who want to specify that they are not open to disabled children. What are your thoughts on that, especially for families walking into international adoption?
Honestly? That is just not an option. As I mentioned, China is a disability only program and I believe other countries are also. Either you get on board with loving and accepting children with disabilities, all disabilities, or you hang up the idea of adoption, international adoption, and maybe even parenting as a whole. With autism in particular, it is extremely common and often not diagnosed in children waiting to be adopted. I ran a poll in a group I'm in specifically for China adoptive families who have kids with autism. Out of the 45 who responded, 43 of them said autism was a surprise diagnosis. Besides that, how many kids are out there in biological families who are autistic and undiagnosed or unvalidated? You said it so beautifully once before that this is not a build your own adventure journey. The fact is children coming from tough starts whether it's an orphanage or foster home, have disabilities. The fact is 1 in 59 children are autistic. What is disability if not a natural human experience? Get on board! *I don't know how to quote this here, but Allison Sweatman posted this amazing thing once in her insta stories - she said disability is not a problem to be solved. It's a difference in accommodation. We accommodate ourselves and our able bodied, neurotypical society all the time. This is just a change in how that accommodation looks.
If you could tell your pre-Harrison self one thing to prepare her for being his mom, what would it be?
So many things. I have to pick one? I'll go with validate your child. That sounds like an obvious no brainer, but so often the narrative in adoption communities is that love will just conquer all and heal all wounds. No one talks about validation. Kids are who they are and the faster you can get on board with that, the better. Our bond with Harry now is incredibly strong and I think it's because we validate him. He was attaching to us all along, but it's a two way street, right? We loved him and wanted the best for him, but I admit we were naive and initially in a fog of our own. I would have told 2018 Amy to not not only love her child but to validate him and all his wonderful autistic traits from day one. That and when you get to China, spend the dang $150 in on a stroller!
Thank you friend, for loving Harry as you do. It was a joy to hear more of your story of becoming his mom! Happy Autism Acceptance Month to you and your brilliant unicorn. Aren't we the lucky ones?!