Why Allistic Parents/Guardians Need Autistic Friends
https://timetolisten.blogspot.com/2014/05/you-yes-you-need-autistic-friends.html
So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.
The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.
I don't mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don't mean "translate my child to me" (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.
There are a whole lot of reasons this is the best thing you can do for your child:
The link has a lot of reasons why this would be extremely helpful.
It seems like we have at least as many allistic people in this forum looking to understand us as we do autistic people looking for support from one another, and those can be very different needs. They can still be compatible needs when allistic people are willing to relate to us as peers, though, and that's always easier to do when we're socially present as something other than improvement projects or half-people who need to be completed before we are relatable. Adult autistics are like your kids. The better roots you have in the community, the more support both you and your kid will have.
A relevant update and further indication that allistic caregivers need to make sure they have adequate connections with a community of autistic adults, not just other allistic caregivers.
In a recent study of ABA's (known to many autistic communities as "autism conversion therapy") impact on autistic kids' presentation of post-traumatic stress symptoms, they found a stark contrast between the distress caregivers reported and the distress exposed autistic people reported. Caregivers were also more likely to report satisfaction with the intervention than the autistic people themselves (which shouldn't really surprise any autistic people, but will be useful info for caregivers), but even caregivers were pretty close to neutral.
Excerpt:
"These accompanying significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, highlights the need for the inclusion of the adult autistic voice in future intervention design. Based on our findings, we predict that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity."
The reason I include this in this particular thread rather than starting a new one is that caregivers with strong roots in the adult autistic community will not have to rely on what may well be a flawed communication strategy between them as an allistic person and the autistic person they are trying to train into imitating neurotypicality. They'll have autistic people around who can give personal accounts of things like, "What was ABA like? Was it traumatizing for you? What about people you know? What's the community consensus?"
"Autistic respondents exposed to ABA were 1.86 times more likely to meet the PTSD diagnostic criteria. Overall, individuals exposed to ABA had a 46 percent likelihood of indicating PTSS. In contrast, 72 percent of non-exposed individuals did not report PTSS."
This study is dated 2018. I can tell you that the autistic community has known this for a long long time. Nobody I know was surprised to see that 46% of respondents here would qualify not just as harmed by ABA but clinically traumatized by the intervention. Every allistic parent of an autistic kid who has roots in the autistic community knows what we know, and their kid is going to be safe from at least some of the mistakes that prior generations were subjected to. Allistic caregivers who make the mistake of assuming that other allistic caregivers are the only real experts out there, and that autistic people have nothing of worth to say? 46% is a really cruel gamble, but that's what happens when interventions are decided on without the input of the community they were allegedly designed to help.
Allistic caregivers of autistic kids need to have adult autistic people around as peers. It's absolutely critical. We really can help.
