Board index › General Discussion › Autism Politics, Activism, and Media Representation

The Trials of Being Autistic at a Autism Research Conference

Page 2 of 2 [ 20 posts ]  Go to page Previous  1, 2

Previous topic | Next topic

Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 9,054
Location: New York City (Queens)

14 Jul 2019, 12:33 am

martianprincess wrote:
cyberdad wrote:
It's actually not necessary to self-disclose your own medical or psychiatric condition to patients in the clinic you are working in. The NT parents (and I am one) want authentic caring healthcare staff who are sincerely interested in the welfare of their kids. I frankly couldn't care if the staff have ASD or not so long as they are providing the best support/therapy for my child.

My own past experience hasn't been great with NT healthcare staff so like Mona I strongly encourage you to pursue your career aspirations but do it for the correct/appropriate reasons.


That’s true, I wouldn’t want to tell parents “hi how are you, I’m going to be your clinician today, and oh by the way here is something super personal about me!” Haha. I meant more in the context of work. My co-workers don’t know about it but sometimes I feel like they should. I hear about impairment a lot when doctors describe Autism but there’s not a lot of normalizing or positive things said about it. I mean, being autistic is frustrating as f**k sometimes but I love that I notice so many interesting patterns in the way buildings are arranged or how the helicopter blades are spinning and it’s those little things I appreciate about it that NT clinicians just don’t “get.”

Personally, I believe that all services for autistic children should specifically aim (at least in the long run) to be staffed, at all levels of the hierarchy, at least 40% by autistic adults and at least 40% by NT's.

And I think it would be best if everyone, including staff, parents, and kids, were to know who was who.

The autistic adults (at least some autistic adults -- not all autistic adults, of course) are likely to have much more empathy for the kids than NT's possibly could. At the same time, caring for kids also has other aspects that are intrinsically very difficult for most autistic people, so it's desirable to have plenty of NT's around as well.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.


Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 9,054
Location: New York City (Queens)

14 Jul 2019, 12:45 am

cyberdad wrote:
Objectiveness is important in that you focus on what would work best in terms of outcomes for your client.

In my experience the doctors and psychologists I have experienced haven't actually addressed my daughter's issues but choose to take a cookie cutter approach because they don't want to invest the time/effort needed to understand their client's individual needs beyond the 1hr consultation time. This is what I meant by lack of authenticity, as a parent it's a glaring problem they seem to be more worried about money.

That's awful. In my opinion an individualized approach should be considered absolute essential -- indeed, the single most essential thing -- not only to understand the client's individual needs, but also to determine how best to capitalize on the client's individual strengths.

The latter is more important than anything else, in my opinion. Any approach that does not capitalize on a child's individual strengths is going to take a huge toll on the child's self-esteem. I am very lucky that my parents appreciated and encouraged my abilities as I was growing up. Had they not done so, I'd be a complete wreck.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.


martianprincess
Veteran
Veteran

User avatar

Joined: 22 Jun 2019
Age: 36
Gender: Female
Posts: 2,048
Location: Kansas

14 Jul 2019, 1:58 pm

Mona Pereth wrote:
martianprincess wrote:
Absolutely, I agree 100%! This is something I’ve been thinking an awful lot about lately. I keep trying to figure out how to start a group or something but I feel overwhelmed and under qualified. One of the most valuable things I’ve learned about this sort of thing is networking and mentorship are key. I have that down at work, I just need to figure out how to do that outside of work. I feel like I can’t even begin to piece together the first step or anyone to contact. I don’t know any other people with autism in my area but I live in a metro city area so you’d think I could figure out how to navigate that. It’s tough. I have a lot of good ideas but it’s hard to actually make it happen.

Have you contacted Autism Society - The Heartland? Some possibly helpful pages on their website:

- State and Local Resources - includes some self-advocacy groups at the bottom of the page, including a local chapter of ASAN.
- Support Groups and Social Groups - mostly for parents, but some for autistic adults.
- Newly-Diagnosed Families Affected by Autism - includes "Saturday Seminars - These are workshop-type meetings held on Saturdays to help our families and individuals with ASD"; hopefully "individuals" includes "adults."

My own thoughts about community-building are discussed in more detail in the following threads:

- Autistic-friendly workplaces
- Building the autistic community?, especially my posts here and here.
- Autistic-friendly social skills vs. blending in with NT's

I would be very interested in your comments.

Please see also my reply to you here.


Thank you so much! I'm going to bookmark this page and comb through everything. I appreciate this a lot.


_________________
The phone ping from a pillow fort in a corn maze
I don't have a horse in your war games
I don't even really like horses
I like wild orchids and neighbors with wide orbits


cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 58
Gender: Male
Posts: 36,036

15 Jul 2019, 1:51 am

Mona Pereth wrote:
cyberdad wrote:
Objectiveness is important in that you focus on what would work best in terms of outcomes for your client.

In my experience the doctors and psychologists I have experienced haven't actually addressed my daughter's issues but choose to take a cookie cutter approach because they don't want to invest the time/effort needed to understand their client's individual needs beyond the 1hr consultation time. This is what I meant by lack of authenticity, as a parent it's a glaring problem they seem to be more worried about money.

That's awful. In my opinion an individualized approach should be considered absolute essential -- indeed, the single most essential thing -- not only to understand the client's individual needs, but also to determine how best to capitalize on the client's individual strengths.

The latter is more important than anything else, in my opinion. Any approach that does not capitalize on a child's individual strengths is going to take a huge toll on the child's self-esteem. I am very lucky that my parents appreciated and encouraged my abilities as I was growing up. Had they not done so, I'd be a complete wreck.


I have seen a paediatrician. audiologist, three psychologists and two OTs, they collectively charged me thousands of dollars to ostensibly help with my daughter's sensory issues relating to noise sensitivity. The approach taken by all of the above was to look at peripheral issues (for example one psychologist ask me to film my daughter and the other gave scripts to read to her) that they were better trained to handle and in the end I realised they were wasting my time. I would prefer these professionals just admit they have no idea what they are doing rather than taking parents for a ride.