autism and aspergers advice

Masterpost: “Asperger’s Syndrome”, “Severe Autism” and Functioning Labels (And Why They’re All Nonsense)

Part 1: “Asperger Syndrome”

If you know a little bit about autism, you know that it’s a spectrum. Some people have very mild autism, and some have severe autism. Some are high-functioning or just have Asperger’s Syndrome and are able to communicate and live independently. Some are low-functioning and need help to survive.

I’m afraid all of this is nonsense, and the fact that it keeps getting perpetuated really hurts a lot of autistic people.

This is a topic we have a lot to say about, so we’re splitting it into two posts (watch for the second part very soon). First off, let’s deal with the term “Asperger’s Syndrome”. We get a lot of asks from people referring to characters with this condition. The problem is, it doesn’t actually exist. Well, the diagnosis officially did exist, but it doesn’t anymore. It is an outdated diagnostic term which is no longer used in the DSM and which is slowly being phased out around the world.

The idea behind the distinction was that there were different “types” of autism ranging from mild to severe. If you learned to speak at a normal (or early) age, were able to communicate in a relatively normal way, and showed an interest in making friends with other children, you were considered an “aspie” - a person with Asperger Syndrome. If you started speaking late or couldn’t communicate verbally at all, and showed no interest in others, you were autistic, which ranged from mild to severe. It was a way for doctors to sort autistic people into categories for the purposes of giving them a diagnosis - and giving them access to assistance. Generally speaking, people diagnosed with Asperger Syndrome got little to no access to assistance, whereas people diagnosed with autism were considered more disabled and given less freedom to care for themselves. On the other hand, those who were diagnosed “autistic” had to live with the stigma of having a severe disorder and were often denied opportunities.

Since all of these people were autistic anyway, it was sometimes hard to know who should be put in which category. The main diagnostic criterion was: if someone with autistic traits learned to talk before 3, they had Asperger’s. After 3, they were autistic. It was taken as a given that you could tell an older “aspie” from another type of autistic by their desire to be social. Spoiler alert: this was a totally arbitrary decision, and when a person learned to talk says nothing about how they function in the present.

So all of this is pretty much meaningless; a person is autistic or they are not autistic. Any one autistic person can have a completely unique mix of traits which is different from anyone else - it isn’t as simple as “this type are like this, that type are like that”. Mod Aira says:

“The very first student I helped to get diagnosed (and then worked as an assistant for) was a little boy in the preschool where I worked at the time. I pointed out that he seemed to be autistic, and my boss said, ‘we used to think that, but he doesn’t mind being touched, he likes playing with other children, and sometimes he makes eye contact, so now we know he can’t be autistic.’ I had to do a little educating with my well-intentioned but ill-informed boss, then we managed to get a specialist to come in and observe him. She was ready to diagnose him with Asperger Syndrome, until she talked to his parents and found out he didn’t start speaking until he was three years old. That meant she couldn’t diagnose him with AS, because that requires starting to speak at an earlier age. The woman was a little confused - how could he be autistic, not “Asperger”, and still be so social? This boy didn’t fit into any of the categories. (It was almost as though the categories were nonsense!) Fortunately, not long after that the DSM-V came out, doing away with AS entirely, and she was able to give him a diagnosis she felt fit him better - autistic, and then with a list of qualifiers.”

This change has been difficult for a lot of autistic people to deal with. Many who were diagnosed with Asperger Syndrome came to identify as “aspies” and to separate themselves from those who identified as “autistic”. Some people even lost their diagnosis altogether, since under the new specifications in the DSM-V, they are no longer considered “disabled” enough to merit a diagnosis. Many continue to refer to themselves as aspies despite the change. This is understandable, and a valid identity - but it’s important that the information get into the mainstream that there is no difference between different types of autism. Rather, there are differences between individual autistic people. Everyone is different, with their own mix of traits and their own unique personality, and there’s no use in trying to subdivide the community into categories in this way.

Speaking of categories, in our next post we’ll get into functioning labels, and the damage they do as well.

We hope this has been helpful. Happy Writing!

HELLO if you are autistic like me or have a sensory processing disorder, noise might be a BIG problem for you in your every day life wether at home, school or work.

I recently bought two pairs of these, though I’m not sure about in the US, they have free shipping in the U.K. and only cost £2.20!!

They are fantastic at keeping sound out, they are attached with a cord to avoid them falling out and being lost and they come in a very small handy plastic case and are easy to take with you and place discreetly in your bag or pocket :))

They are soft and block out noise very well and they have helped SO MUCH with reducing meltdowns and sensory overload and distress caused from noise, for example we were having work done in our garden with lots of mechanical tools and it was also very hot so I had to keep my windows open, but using these made the noise almost non existent I really do recommend these!!

Not only do they work tremendously, they are very cheap and small and easy to use!!

https://www.amazon.co.uk/Moldex-Rockets-Cord-Earplugs-Pair/dp/B004KIT5H2

Making ear defenders available to your autistic child

I think most people would be surprised to know that my son has some auditory sensory processing issues. I’m purposefully not specifying hypersensitivity (being more sensitive) or hyposensitivity (being less sensitive), because the same person can experience both hypersensitivity and hyposensitivity in the same sense (auditory, tactile, etc.), from day to day or even from hour to hour (or different types of input - e.g. for auditory if could he different frequencies). Back in November 2015 my son told me that “sometimes I can’t hear quiet sounds, only loud sounds and very loud sounds and sometimes it is a problem for me.” That would obviously be describing hyposensitivity - but not all the time, and yet he is also obviously hypersensitive at other times, when he has put his hands over his ears.

He doesn’t tend to show any obvious distress for people to notice, but the signs are there if you are paying attention. (Again, this is a problem with the high-functioning / low-functioning labels and illustrates the argument against using them - people would look at my son and describe him as high-functioning (friends have!) but all that really means is that his struggles are less visible, not - as people seem to think - that he has hardly any or that they are “mild” and “nearly normal”, and that therefore he doesn’t need any consideration).

I had sometimes wondered about trying getting my son a pair of ear defenders, but not being very knowledgeable about sensory processing at that time, or how it affected my son (and I wouldn’t profess to be an expert now, just better than I was!) it wasn’t something I attached much importance to, he seemed to be managing fine.

Then (this was years ago) our family went to a fireworks display at a friend’s house. One of the guest families had brought loads of ear defenders for the kids to wear (most of them very young), so that they could fully experience and enjoy the fireworks without being scared by the loud noise. My son had coped with fireworks in the past by having hands over his ears, or being inside. Now he enjoyed using ear defenders in amongst lots of other children doing the same, and it was brilliant! As the family left with all the ear defenders, I thanked the mum for bringing them, and she insisted on gifting me a pair for my son, which was such a lovely thing to do and I am so grateful for. They’re not used a lot, but when they are used they are so helpful!

Examples of when the ear defenders have benefited my son:

Fireworks night.

Vacuuming. Before I get the vacuum cleaner out I always warn my son and ask if he’d like his ear defenders - he always does, and is perfectly happy being in the same room as me vacuuming with his ear defenders on - he’s even enthusiastically joined in and helped me before :)

Extra quiet time. His ear defenders live hooked onto the side of his bed. He has occasionally worn them in bed whilst reading before going to sleep.

Supporting a friend of my son’s playing a musical instrument he was learning, by watching him perform in a mini concert. My son was perfectly happy watching with his ear defenders on.

When my daughter wanted me to take her and her friends on a shopping trip to a busy indoor shopping centre/mall on a Saturday afternoon. My husband was out for the day so I knew my son would have to come with us and it worried me. My daughter had newly started high school and made new friends so I didn’t want to have to say no to her for her first ever shopping trip - she’d organised it and it was really important to her, but my son and I would have to accompany them to each shop, mostly waiting outside. I took my son’s iPad with us, and also packed his ear defenders. I think the ear defenders were invaluable! He chose to wear them the whole time we were there, with his zip-up hoodie’s hood up over them, which concealed them a bit. Near the end, he didn’t have the hood up, and I noticed that I seemed to get a few sympathetic glances from people which I found disappointing, but I was proud of my son for feeling confident about wearing them visibly. I had expected us to have to leave before my daughter and her friends had finished shopping, but we didn’t, and I think having the ear defenders with us was a big reason for that. (My son and I also took a break in a cafe before the end, something he’d been keen to do as part of the trip, and he’d used his iPad whilst waiting for the girls to come out of shops.)

So even if you think your child is coping without ear defenders, they’re easy to obtain and not expensive, so you could give them a go. Let your child try them out, explain that people from various occupations use them in their work, for example builders on a noisy building site. It doesn’t cut out all sound, just makes it less. Make them available to your child and let them express when they want to use them, you’ll be giving them the power to make their environment more comfortable when they need to.

tantrums vs meltdowns: goals

so, most posts talk about how the difference between meltdowns and tantrums is that tantrums are goal oriented, but what about meltdowns that are also goal oriented? do they then become tantrums?

many of my meltdowns are just me getting overwhelmed, my brain checking out and my body going AAAAAAAAAAAAAAAAA with no reasonable direction

but some have goals? for example, a few months ago i had a really big meltdown because my Support Worker at school transferred schools, and he was the one who usually helped me adjust to things to prevent more meltdowns. the meltdown was because of change and i didnt know what to do, but i definitely had a goal: i wanted the change to stop, i wanted my support worker back. does that mean it was a tantrum not a meltdown?

another time, my dad served my food so it was all mixed up and touching and i couldnt work out how to fix it with the amount of executive functioning i had available (i was already pretty burnt out and stressed) so i had a meltdown. the goal was simple: i wanted to be able to eat my food but i couldnt work out how. it ended when my mum fixed it, although i was burnt out and mostly nonverbal the rest of the night. does that mean it was a tantrum because it was goal oriented?

does anyone know?

its-furiohsa-not-furiosah  asked:

Hi there, DrFerox I am currently a pre-vet undergrad that may possibly be diagnosed with Asperger's Syndrome. I am worried a diagnosis could keep me from being a vet or from being a good vet. I feel like I have a unique connection with animals, but not so much people. Do you know anyone in the Veterinary field that are Aspies and would you think being one would hinder a vet greatly? Thank you.

I don’t specifically know any vets with Asperger’s Syndrome, or whatever they would prefer to be labeled, but I am not privy to most other people’s inner workings of the brain. There are many that I suspect, or know, have something going on, but I have no right to know those details. Those that I do specifically know about have either decided to tell me, or (for some unfathomable reason) their mothers have decided to tell me.

The veterinary community attracts a lot of people who feel more connected to animals than they do to humans, and who feel animals understand them better than humans, so I highly doubt you would be alone with your potential new label. And it really is just a label, it’s there to help you understand yourself, not to shove you in a box.

There are lots and lots of veterinarians practicing who are ‘a bit odd’ in one way or another. It comes with the territory.

I wouldn’t worry about Asperger’s Syndrome, or anything on the autism spectrum, from holding you back in veterinary medicine if you’ve already come to the conclusion that it’s the thing that interests you, and you can make your way through the entrance interview. Vet school does have some lessons on how to talk to clients and approach people, which is very handy. You get better with practice.

I have met lots and lots of vets and I don’t think a single one of us is ‘normal’.

Top 10 Things I really wish people would understand about autism

1. Autism is CLEARLY an autosomal recessive genetic trait that is not effected by gender, class or race. (meaning black women are just as likely to be autistic as white boys people!) This also means autism doesn’t just magically go away at age 18; it is  forever.  Negative symptoms of Autism can get better or worse by learning coping strategies or getting more overwhelmed physically and mentally.


2. There is no way vaccines could cause autism; even if autism wasn’t a genetic trait, which it is!


3. Being autistic means you are smarter, have an overall higher cognition level of most things/a higher I.Q. ,not lower compared to most people.

Autistic people tend to be far more creative, intelligent, strong willed and honest then the average person.


4. If a person cannot speak this doesn’t mean that person can’t hear you, understand you, or that they are incompetent or unintelligent.


5. Being “socially stupid” does not mean that you are stupid at everything else.


6. Some Autistic kids really need home school and some really need the push for more social interaction in public school.


7. The main “problem for autistic people” isn’t “behavior issues” it’s communication issues and having a nervous system that makes the person 10 times more sensitive then the average person which is mentally and physically overwhelming.


8. Because autistic people are so overly sensitive to everything, people need to realize things that are just a little harmful for all people like :

dust, pollen, gluten, high sugar diets, sound pollution, light pollution, florescent lights, everyday chemicals

are horrible for autistic people and can cause them to be so overwhelmed they cannot speak/ are in extreme discomfort daily.


9. Because autistic people are so overly sensitive to everything, people need to realize things that are just a little good for all people like:

building ramps instead of stairs to houses, living in a clean, quiet, peaceful environment. Using pet therapy, swimming therapy, occupational therapy, seeing a councilor once in awhile, brushing therapy, weight therapy, having a very comfortable bed, eating and exercising correctly, being your own best advocate

can REALLY help any autistic person be so much happier, healthier and independent.


10. Sometimes a parent and autistic child can do everything right and an autistic child will still not be able to be independent, safe alone, will still be in agony and cannot speak. Until we recognize that the main problem for Autistic people is a hyperactive nervous system and address this scientifically there will be little hope of change for these people.

A Brief Talk About Working with Autism

 I haven’t had a job in a while, and I’ve recently begun working again. I always forget how mentally draining it is to work, because you have to be “on” for so many people.

 There are the customers, your co-workers, your boss…there’s absolutely no time to just be yourself. No breaks, because there’s always somebody watching you.

 I really wish autistic people were more accepted in the work force, because I’d like to be able to work while still being myself, and not feeling constantly stressed out and exhausted from exerting so much energy every second of every minute of every hour, until my shift is over.

 Thoughts? Advice?

Writing Autistic - The Problem With Empathy

So, one thing that keeps happening since I got my autism diagnosis is being told that I should watch a show because it has an Autistic character. Don’t get me wrong – I want to see Autistic characters. I have wanted that since before I had a word for what I wanted. It’s one of the things that made me want to be a writer.

But I rarely see it done well. I see an “autistic” character and I don’t see me. I see some weird, funhouse mirror image. Bizzaro Caroline.

One show people keep telling me to watch is The Bridge.

Keep reading

Any advice on wearing contacts?

Okay so I have OCD and clean my glasses obsessively; several times a day, several minutes each time. No matter how many times I remind myself that they will never be clean, OCD rears it’s ugly head and tells me I *have* to clean them again anyway. Tiny dust speck? CLEAN THEM. Anyway, this has caused for me to end up ruining every single pair of glasses I’ve ever owned since I started wearing them at age 12. I just got the ones I have now back in March after my car accident (which my dad kindly paid $320+ for them) and already caused for the anti-glare to smear after maybe two months of having them. My husband and I discussed it and decided it would be best for me to purchase vision insurance so I can get contacts. Insurance takes effect on September 1, so I may go ahead and schedule for that day and get the exam done.

Listen. I fought this for a *really* long time because I’m also autistic and change is not something I tolerate well. So this will be my first time ever wearing contacts. Is there any advice anyone can offer? I’ll have lots of questions by the time I get to the optometrists office, but if anyone has any advice or reassurance, that would be great. My battle with OCD is very exhausting, so I have to do this, but I’m super terrified to make such a big change.