point of autism testing?

dendriforming:

realsocialskills:

arobotstolemyuterus:

arobotstolemyuterus:

slashmarks:

realsocialskills:

Anonymous said to realsocialskills:

What’s the advantage of getting formally tested for Autism? My Psychologist pretty much just offhand diagnosed me with Aspergers, though I’ve know I had AS for longer than that. Anyway, since my family and I already know, is there any reason I should formally test for it?

realsocialskills said:

I can’t tell you whether it’s a good idea for you or not.

There are several reasons that I think it may be worth considering.

One is that external validation might matter to you more than you think it does. I knew I was autistic before I was diagnosed; diagnosis still mattered to me a lot more than I expected it to matter.

One way is that it can matter is in your relationships with other people. If you want to talk about being autistic, being professionally diagnosed is likely to be helpful. That definitely made a big difference for me.

Another way that autism testing can be helpful is that it can involve testing for other things as well. That’s worthwhile partly because it’s possible that another diagnosis fits you better than autism (that happens sometimes), and also because it’s not at all uncommon for autistic people to have additional cognitive or physical issues.

Testing can give you information about cognitive and neurological strengths and weaknesses beyond a one-line diagnosis. It can also tell you about other conditions you might have. For instance, testing can sometimes tell you:

  • If you also have ADHD
  • If you’re having motor skills problems, and what kind
  • Whether your memory is typical
  • Whether you’re having reading comprehension problems
  • And various other things potentially worth knowing

All of that can be overlooked if you’re doing ok in school or if people are already attributing everything to one diagnosis. It’s good to know where you stand and what your cognitive strengths and weaknesses are. Testing isn’t always helpful for that kind of thing, but it definitely can be sometimes.

Testing can help you to get accommodations. For instance, if you have difficulty with handwriting and your testing documents that, it can get you the legal right to use a computer for writing tasks and tests in school and university. That applies to a lot of other things too. If there are supports or accommodations that you need and aren’t getting, testing might help you to get them.

This is also true if you’re in high school now and planning to go to college soon, even if all your support needs are being met in high school without documentation. You can’t assume that will continue to be the case in college without documentation – they may well require it, and it will be easier to get what you need if you already have proof.

One thing to consider if you are under 18 (or even under 21), is that diagnosis is often taken more seriously if you were diagnosed as a minor. This can affect access to services and support if you turn out to need help later in life. (It won’t necessarily make you eligible for help even if you really need it, but it does make it somewhat more likely.)

Formal diagnosis also can sometimes open up the possibility of trying psychiatric medication to manage some symptoms. This can also be a downside to diagnosis if it might mean that someone will make you take medication you don’t want to take. Some medication can be really helpful for some people; it can be a really bad idea for other people.

Another downside to consider is that having a diagnosis closes off some options and complicates others. For instance, autism, ADHD, and psychiatric conditions are disqualifying for US military service, even in noncombatant roles. Some other jobs or programs you might want to apply to might ask if you have any disabilities or mental health conditions (sometimes this is illegal; sometimes it isn’t). If you have a diagnosis, you will have to either lie or disclose. That can complicate some things.

Another downside is that getting diagnosed with autism might result in people trying to make you go to behavior therapy or social skills groups. If you’re an adult, it will probably be reasonably easy to avoid doing this. If you’re a minor, people might be somewhat more likely to succeed in making you go to bad therapy. (Although that might happen anyway even without a diagnosis.)

It also might become harder to get doctors to take physical symptoms seriously. Sometimes diagnostic overshadowing means that everything gets attributed to autism even when it isn’t.

That said, I think all and all, the advantages to diagnosis outweigh the disadvantages for most people, particularly most younger people.

tl;dr Overall, I think that if you’re autistic or suspect you might be, pursuing formal diagnosis is usually a good idea. That said, it’s a very personal choice and your milage may vary. Scroll up for some reasoning.

slashmarks said:

It also may prevent you from immigrating to a lot of countries (for instance, Canada), may result in you having custody of your children taken away as an adult, and in some states can require you to jump through additional hoops to get a driver’s license, like requiring you to find a doctor who states that your autism doesn’t make it unsafe for you to learn to drive.

arobotstolemyuterus said:

It also has the potential for you to be declared incompetent and in need of a guardian as an adult (especially if you’re under 18 and it can be done before you’ve had the experience of being an adult and responsible for yourself in the eyes of the law, but it’s not unheard of for parents to get a competency hearing even if you are over 18). 

I mean, ultimately that depends upon your family, but it’s worth considering if your family will realize that this diagnosis doesn’t change who you are or if they have deeply entrenched ableist beliefs that will lead them to pursuing that sort of thing. I’m not trying to scare anyone, but it’s worth thinking about your family’s attitudes toward autism and the way they treat you now before pursuing a formal diagnosis.

arobotstolemyuterus said:

I should clarify what I mean here, because I don’t want to scare anyone. If your parents are abusive, or if your relationship is unhealthy because they try to foster codependence, it is possible that they will use an autism diagnosis to continue to exert control over your life and the decisions that your make, and there are formal legal measures that can help them do this. (FWIW, if you’re doing fine in school and have lived without a diagnosis for a long time, if this were to come up, there would be ample evidence that you could present in your defense.) 

If your family holds the ableist belief that people with autism by definition will never be real adults capable of making decisions for themselves and they are unlikely to change that view in the face of new information from a doctor, there could also be a problem. OP says that their family already knows, so they’ll probably be okay with this, but if anyone out there reading this is also considering a formal diagnosis, this is one of the risks worth considering.

 I think, in most cases, your family is going to realize that you’re still you, the diagnosis didn’t make you autistic, and while you may have to combat some misinformation, it’s unlikely that it will change your relationship with your family too much. But if your relationship with your family is unhealthy (because of their behavior) a diagnosis could be ammunition for them, and it’s something that needs to be considered before seeking a diagnosis.

realsocialskills said:

Important additions. Thank you.

dendriforming said:

Even if your parents wouldn’t think of it by themselves, the evaluator may attempt to persuade them that you should be put under guardianship or into an institutional setting. They may do this by lying about the laws. My evaluator told my parents and me that simply having an autism diagnosis made me legally incompetent to appoint a power of attorney, and that being under guardianship was the only way anyone in my family could ever make medical decisions on my behalf if I became incapacitated.

If your parents are going to be present at your evaluation and seem willing to accept misinformation like that uncritically, you may want to be more cautious about getting a diagnosis.