Seeing as there’s been shit going around recently about self-diagnosis (yet again) and most of it is from a pretty US centered view (not that there’s anything wrong with that, the majority of the English speaking community on tumblr is american), I just think a few points need to be made.
The US healthcare system is fucked, and that puts additional barriers into place for self-diagnosed people wishing to get an official diagnosis. But there are serious barriers in other places too. Having a decent healthcare system doesn’t necessarily mean that it’s easy to get a diagnosis. (all of these also apply in america too, I think)
This is of course, going to be rather UK centric, I am aware that the situation in places like france is significantly worse (look up “le packing” tw: abuse)
Ignorant GPs/family doctors. GPs in the UK (and I believe the UK has some of the most highly trained doctors in the world) will have had at most, a 1-2 hour lecture on autism, which may have been full of misinformation and stereotypes (see, my uni level psychology course showing a video of rain man as an example of autism), up to 10-20 years ago. Their awareness of autism will likely be restricted, to stereotypes and a collection of wrong ideas. You might be luck and get someone with some general psychological knowledge or training, but chances are their response will be to pull up a list of symptoms on their computer. The NAS site even talks about “presenting your case”, which isn’t really a great thing to have to do.
To give an example of this my boyfriend (who is clearly autistic, this was agreed upon by the guys who diagnosed me based on what I told them about him) doesn’t have a diagnosis yet because of the ignorance of his GP. We said we thought he was autistic, she brought up a list of autistic symptoms in children aged 2-5 (my boyfriend was 24 at the time) and stated that she didn’t think he was autistic because “you seem to have normal intelligence” and “these things are always picked up in childhood anyway”. She then went on to be viciously nasty when he got upset trying to explain.
There are even more problems if you are female, black, or trans (especially trans women, the male brain theory of autism is so, so damaging). Doctors think people in these groups can’t possibly be autistic, despite that fact that a really high proportion of trans people are autistic. And black people are as likely to be autistic as white people, and women are just under diagnosed.
Not all diagnosis will be accepted. If you don’t manage to get past the GP, you could opt for a private diagnosis, which will be about £3000. Which is a lot of money. Basically no one has private insurance here because the NHS is usually so good. And even if you get a private diagnosis there are lots of places that will only accept an NHS diagnosis.
Negative impacts of a diagnosis. If you have a paper diagnosis it should not be held against you, legally. But realistically, if you end up in something like a custody battle, it will be. Without a doubt. If doctors have so little training in autism, judges are even more likely to believe lies like “autistic people don’t have empathy”. This will affect their judgement.
Wait times and lack of services. If you do get a referral, it could be months and months before you actually get to see a qualified specialist. My boyfriend has at this point been waiting nearly a year from the time he managed to get a referral. I was lucky and only had to wait two months. Even if you get a referral the specialist centre may not be in a place you can easily get to.
So, this means that even if you live in somewhere with a decent health care service, it can still be really hard to get a diagnosis. And frankly most people who self-diagnose are right. And guess what? The NHS supports self-diagnosis. “Getting a diagnosis of autism in adulthood can be a mixed blessing and some people decide that they are happy with self-diagnosis.”