Autistic Hedgehog

Unfortunately, I was diagnosed in the mid-90s, and it sounds like things have changed a lot since then, so I personally can’t really help.

Any other Hedgies have some information on this?

I’m not sure it’s precisely the same from person to person, but I do think it may be somewhat similar, at least. 

For me (since I can only speak for myself; if other Hedgies want to talk about their own experiences with it, please do) I know what I want to say. The words are in my head just fine, but they will not come out of my mouth. They just won’t. At my last blood test, I managed to croak out the word “crochet” (they were considering if they could take the blood from my fingers instead, so I pointed to my left hand, and eventually got that one word out, which my husband at least understood) and I’m almost never able to do that. Of course, what was actually going through my head was “Please use my left hand, since I need my right hand more for practicing my crochet” but that just would not come out.

It might not express itself in quite that way for you, though.

What I do find interesting is that you mention trouble regulating volume, which is a common issue for autistics. I actually have pretty good control with that sort of thing and yet there are still times when it happens.

If this diagnosis is important to you, don’t let your psychiatrist dismiss it. They are not you. It’s easy for them to say, from the outside, that you don’t have too much trouble, but that’s for you to say, not them. After all, they only see you once in a while. You live in your head all the time. 

If you really relate to a lot of things here, and you’re really wondering, there’s nothing wrong with that. It is a good thing to research as much as you can, especially if you want to bring it up with your parents and/or psychiatrist.

If you do have some hypochondria, then it’s good if you have a firm grasp on why you feel this way before you bring it up. Don’t be afraid to write down the things you relate to before you talk to anyone about it, so you don’t forget what you want to say if you get flustered. I imagine with hypochondria, you could easily face people being dismissive of you about this, so organization is important. Do your best to make sure they understand you did a lot more than just glance at a list of symptoms.

Unfortunately, no matter who you are, an autism diagnosis is a subject that it can be very hard to get into with a lot of parents and psychiatrists. There’s a lot of ignorance about what autism even is. If they point out that you’re already sixteen, let them know that a lot of people are still diagnosed quite late in life. If they think autistic people aren’t capable of speaking, point out that autism is a spectrum with many different symptoms, and mutism is only one of them that not all of us have. Your best shot is to know as much as you can.

Even if they won’t listen, if you feel strongly about this, that’s okay. We will listen. There’s always support to be found here and AH and in the community in general. 

Here is a list of criteria put together by someone who is actually autistic, rather than some unfortunate “expert” with a lot of misconceptions. Just a few things I’d like to point out for you to keep in mind while reading:

1. Teenagers or adults with undiagnosed autism are the proverbial babies that are taught to swim by just pitching them into the water. Many develop a number of coping mechanisms to deal with their autism symptoms and even overcome a few altogether. That an individual may have done so does not disqualify them from being autistic.

2. Some of these things can be very hard to identify from within. It may take a lot of time and thought to see if this criteria applies to you, because it can be so difficult to notice things you yourself do. As well, some of these are things (like differences in sensory perception) that one may not have had much reason to realize is different in themselves from what it is in others. I never knew I was synesthetic until a few years ago, because I always assumed everyone else processed the world synesthetically too.

3. It’s my firm belief that the underdiagnosis of DFAB girls is due in part to socialization. Two (erroneously) common “traits” of autism are a lack of empathy/emotion and less desire to socialize. However, any child identified by others as a girl will be encouraged, from a very young age, towards pursuits and hobbies that surround empathy and socialization (where as a child identified as a boy will not be, or will be encouraged towards these things to a much lesser degree). They will be expected to be more emotional and social, as well as to be less energetic and rowdy than, DMAB boys, thanks to sexism and cissexism. So when dealing with someone who either identifies as female or especially who was identified as female from birth, keep in mind that some of these traits may have been greatly lessened or forced out by how the person in question was raised. That doesn’t mean that the individual doesn’t necessarily have them, but may have been forced to have them “under control” so they don’t show nearly as strongly as they otherwise might. 

Oy vey.

Many autistic people aren’t in the least bit antisocial. A lot of us aren’t even all that introverted, but can be driven to both introvertedness and antisocialness by the way society treats us. Being social doesn’t even begin to disqualify you from being autistic, and I’m sure I can find other autistic people right here on tumblr who’ll agree with that, if you think a wake up call might work on your mother.

Otherwise, often the best way to look into diagnosis is to get a referral from your GP or bring it up with your psychiatrist if you already have one. It can be difficult, because there are a lot of misguided notions out there like the ones your mother expressed. In the end, it’s about whether it’s worth it to you. If you feel it would make a difference for you, you should pursue it regardless of what your mother thinks. She’s not the one who struggles with eye contact or has meltdowns, after all. 

Honestly? This is about you, not her. Unless her anger is very uncomfortable or dangerous to you, worry more about your feelings, rather than hers. If you have to, ask for your dad’s help, since it sounds like he might understand. Your mother may not even need to know about it.

If it is important that you talk to her about it, then there’s something to keep in mind: Modern rhetoric is on autism is still very parent-blaming. The days of the “refrigerator mother” might be largely over, but all these things science keeps thinking might be “causing” autism feels like blaming, too. Too old, too young, where you live, what you eat, how much money you have…these are all correlations, but they’re often put out there by journalists as causations, and that’s wrong.

Unfortunately, it also gives the impression that in some way, if a parent had just done something differently, their kid wouldn’t have autism. In truth, these things are likely just coincidences, but no one tells parents that. So many parents, consciously or subconsciously, end up with the feeling that if their child is autistic, it would be their own fault. Organizations like Autism Speaks don’t help them get through that feeling. 

That is most likely what you’re up against, or at least part of it. It’s terribly unfortunate, and terribly common, for resistance to diagnoses of neurodivergence to come from this feeling, for parents. And your mother needs to understand that this is in no way about her. It’s about you. It’s about how you feel and what’s right for you. Do you feel like there’s something “wrong” with you, or do you simply see that you have differences, and want a name for that?

Think about what you want to say and how you want to say it. What this means to you. As I’ve advised before, write it down if you need to. If that doesn’t work, you may have to be more underhanded about it, but again, ultimately, this is about you, not her. 

I know that. My point was simply that we know the different ways autism can look in adults, that it can even look so little like autism on first glance that it slips past, and we have actually known this for a very long time, so there really is no good reason to not have more experts on autism in adults. 

I was actually thinking back to an article I read something like ten years ago (when you’re young, and you’re autistic, and people know you’re autistic, they will inevitably inundate you with articles). It was about adults exactly like that, people in their 30s, 40s, even their 50s, who got by for a long time without an autism diagnosis simply because they could pass enough. And about how experts were starting to recognize the signs of that. And yet somehow, adult autism experts are rarer than hens teeth. 

That there are other problems with obtaining autism diagnoses is a given, but that the “You can speak/hold a job/show emotions/etc. so you can’t have autism” ignorance is still so prevalent, when we’ve known for more than a decade that autistic people can do those things, boggles my mind. 

The first thing to do is try asking your GP for a new referral. Explain that the psychiatrist she referred you to refused to even talk to you about it. It may take some time to get the referral, but she ought to be willing and able to do it. There’s a big difference between someone saying you don’t have autism and someone refusing to even discuss it, so in this case, you didn’t actually remotely get what you went to the psychiatrist for.

It might help to do some research and see if you can find any autism specialists in your area that your GP can refer you to. Whatever else, and I know this is hard, but try to be firm and clear with your GP so that she understands exactly what the problem is. If you need to, write down what you want to say beforehand, just in case your brain does the Autism Nope on you. I’ve walked out of a lot of doctors’ offices without saying what I wanted to because of that. 

Start there, and see what happens. 

If you really need to help, then it might well be worth it. Though I wonder, do you have a psychiatrist or a doctor you see on a regular basis, who would be willing to change the wording of your diagnosis to fit the new DSM, so you wouldn’t have to go for reevaluation? If you have someone already who might do that for you, talk to them first. If not, do what you need to do to make yourself comfortable.

It’s really unfortunate that this is affecting people like this. By all rights, anyone with a diagnosis that is being rolled into the autism spectrum ought to have their diagnosis changed automatically, but it doesn’t seem like that was planned for. I suppose it’s too much to ask that the American system be efficient.