Published on 12, July, 2020
Hello everyone. I'm the mom of two teenage boys, living in the US.
One of my sons I have suspected to be autistic for years, although so far he is only diagnosed with inattentive ADHD.
My other son has struggled with severe separation anxiety and sensory defensiveness and ARFID, but I frankly didn't believe until recently that he might well also be autistic - it wasn't as obvious somehow - I simply thought he was introverted and socially anxious and had sensory issues.
It's also clear to me that my husband, a stereotypical science nerd with very rigid habits (alongside many wonderful qualities), is autistic; and I myself also definitely have some neurodivergent qualities, although I think I have spent my life desperately trying to seem "normal."
As the one who has primarily been responsible for all the big parenting decisions (to homeschool, when and whether to seek various therapies over the years, how to gradually launch these two almost-adult boys into their next chapters, etc etc) - and having a natural tendency to worry like crazy, I feel like I go around with my heart in my throat a lot of the time. At least in the US, genuine understanding of the neurodivergent experience is a lot easier to find outside of the professional community (of therapists, psychiatrists) than within it, and so when one really needs help, it's hard to know where it's safe or productive to turn. I think that's the worst part - being desperate for guidance, and finding more MISunderstanding than understanding when one reaches to professionals for support. I long for a day when there are more neurodivergent people in the clinical community.
That's probably more than enough for now. Sending out good wishes to all of you!
Hi again, Calla. No problem!
The coach is Yulika Foreman Her website: https://www.theexpertally.com/about
I find her Instagram account informative (link on her website).
Let us know how you get on!
I would offer a Zoom consultation, but my professional indemnity insurance does not extend to the USA unless I take out a mortgage to pay the extra premium!
Apologies for the very slow reply, Ottilie. You're right, that's the problem - the mental disorder model is so pervasive in the US. And yes, it's so frustrating and demoralizing to go to a therapist hoping to find support and insight, and realizing that you actually have more insight than they do. If you're still following this thread, and you would be able to give me the contact info for the autism coach you found in Boston, I'd really appreciate it. All the best to you!
I'm sorry that I'm so late in responding. Ian, a special interest group like this is exactly what we need in the US - I think there are efforts in this direction by certain individuals, but so far nothing large-scale has resulted. Having a therapist start with "I am autistic and I have ADHD" would give me such a profound sense of relief - it would save so much explaining and misunderstanding to be dealing with someone who knows neurodivergent experience from the inside rather than having read or studied about it. I hope it will start to get easier to find social workers like you in the US!
Sometimes being autistic oneself helps to see where the kids are coming from. We are all different. I enjoy training and meeting clients. In a professional context I have a professional boundaries and procedures to follow. I am less comfortable making small talk in "social" situations.
Here in the UK a lot of professionals are "coming out" as neurodivergent. I am a social worker and the British Association of Social Workers has set up a special interest group for neurodivergent social workers. It has also produced a Code of Practice for all social workers working with clients who are autistic or have learning difficulties (for US readers that means retardation not educational disability).
As a social worker I sometimes start " I am autistic and have ADHD. I've been there, done that taken the Ritalin and lost the tee-shirt. Now tell me about yourtself ... "
I have recently been recognised as a DSA-funded Non-Medical Helper - Mentor for university students with autism, ADHD or mental health issues.
From my experience the US treats autism more as a mental illness. The whole health care system is different to navigate than the UK. Because we were in the Midwest it's probably less progressive than where you are. Where we were it was actually hard to find a therapist that wasn't Christian and thinks the answer to problems is faith in Jesus.
I shortlisted an autism coach but we moved back before I could use her. If you want I could give you her details over dm. She's based near Boston but she does online too. She may know of someone if you want in- person. I find talking therapy doesn't work and a lot of time can be spent trying to help a therapist understand autism. It's practical strategies that are needed, things that you can implement in every day life, and also an advocate.
Calla said:I often wonder if the US lags behind other countries in the way we approach autism...
That will be very much a regional thing on both sides of the pond.
The UK South East is fairly well setup but rather overloaded with work for the limited resources they have. Further north to the likes of Sheffield there is less resource but less demand, and a less progressive mentality than the South East in my experience.
Compare things in the US where you have ultra progressive California versus ultra conservative Alabama - huge differences in resource and views on autism.
Overall the US does seem more accepting and resourced, at least in the Democratic states.
Hi Ottilie! Thanks for responding. We live in the Washington DC suburbs. I've been thinking along the lines of an autism coach too, but looking locally, I have found very little. I did recently learn of a group with neurodivergent coaches located somewhere else, but who do virtual appointments. I had hoped to find an in-person option, but virtual moght be better than nothing. I'm curious how you find the climate in the U.K., compared to the experience you had in Michigan...I suppose it's hard to make generalizations, but I often wonder if the US lags behind other countries in the way we approach autism...
Hi Calla, welcome to the community. Which part of the US are you in? I lived in Michigan for 5 years. I returned to the UK last year. I'm diagnosed autistic recently. My son was diagnosed 17 years ago (he's 19 now) and my daughter is in her mid 20s and self identifies as ADHD and is considering whether she is autistic too.
I wonder if you've considered an autism coach for your family. This was something I was considering before we moved back to the UK.
Calla said: from what I've gathered, at least in the US, even those who specialize in working with autistic kids are almost always neurotypical themselves
That is probably because they need a strong degree of empathy to be effective in their line of work I guess - something aspies are not often very good at.
I agree about the therapists being mostly NT as I don't see aspies doing well having to meet new people a lot and deal with their issues without being overloaded themselves.
"Physician heal thyself" is definitely a good place to start. But I think that although in research, there probably are a high percentage of autistics, this is not so much the case among therapists who actually work with kids; I've encountered very few practicing psychologists/ therapists who didn't seem heartily neurotypical, or who had any intuition about my kids' struggles. Maybe that's because my boys didn't have autism diagnoses and we weren't dealing with therapists who were trained specifically to work with autistic kids. But from what I've gathered, at least in the US, even those who specialize in working with autistic kids are almost always neurotypical themselves, and come from the perspective that their job is to make autistic children resemble NT children as closely as possible, rather than to attempt any understanding of the autistic child's inner experience.
Calla said:I long for a day when there are more neurodivergent people in the clinical community.
That is kind of ironic as there are probably a high percentage of people in the clinical community who are undiagnosed autists themselves.
The specialisation and focus plus the desire to be doing the research largely away from people are all things that many autists strive for, and the intellect required to do this at a high level is another classic autistic trait.
If only the phrase "physician heal thyself" were taken seriously, the community may begin to see itself for what it is and learn to treat others in a more appropriate way.
Just my take on the scene.