Monday, 31 March 2014

What Do Autistic People Want, What Do Autistic People Need?

For this year's Autism Acceptance Month, Thinking Person's Guide to Autism is asking autistics to write an answer to the question “What Do Autistic People Want, What Do Autistic People Need?”
Those are questions that most autistic people don't usually get asked. Other people decide what we want or need, especially in case of autistic children and therapies.
Many of our wants and needs are the same as any other person- neurotypical (NT) or autistic. 
Many of us want to get married, have children, and have friends, but just as with NT's, not all autistics will want those things.
There are still quite a few NT people who believe that all autistics want to be alone. Of course, there are times we do want or need to be alone to decompress but it certainly does not mean we want to live day in and day out like that.  We enjoy being with and doing things with other people.
We want/need to be loved and accepted for who we are – stims, quirks, and all.
We need/want equality in education, employment, and healthcare.  That means we need accommodations so we can perform to the best of our abilities at work or school.  Accommodations help us to be on a more equal footing, just as I have a para-equestrian classification that gives me accommodations for horseback riding and makes competition more equal for me.  It does not give us an advantage over others, but helps make things more equal. We are just as good at our jobs as any other person.
We need doctors to take us seriously when we say there's a problem and not just say, ‘Oh, it's just the autism’ or ‘It's all in her head’. Some of us are very in tune with our bodies and notice slight changes. With autistics who don't realize when they're sick or hurt, the doctor needs to be vigilant and explain 
what signs to look for and also not to get angry and blame the autistic person for not knowing when they have an issue.
I have had some issues for years and the doctors will not look into them and they just dismiss them.  I'm not sure why.  Maybe it's my communication problems or because I also have mental health issues.  Whatever the reason, they don't believe me and they should.
We want/need to be listened to and taken seriously. I have had issues, like past sexual abuse, that have been made light of (idiom meaning to not take seriously) by my first psychiatrist and another adult who I was supposed to be able to trust.
I don't tell many people things, as I have learned that you can’t tell things to most people. The problem is that the people I am supposed to be able to trust, usually betray me so that is another thing I want/need-- people who I can reliably trust.
There are people who say they are my friend and then they disappear. 
Autistics need true friends who we can trust and who won’t make fun of us for our stims or fears.  I have strong irrational fears but making fun of them will only make things worse.  If we are supported through our fears, then maybe those fears will lessen over time.  Treating them as something silly 
will only make them worse.
We want and need to be ourselves. 
Do we really need to hide our stims especially when they help us?  Yes, they may sometimes seem unusual to NT’s but some of the things NT’s do seem unusual to us!  I have spent most of my life hiding my stims, pretending I get jokes, hiding my fears and anxieties, pretending to “act my age”, and pretending I can do it all.  I am trying not to hide the real me as much but it is hard.  I don’t even know the real me and my severe anxiety holds me back. 
I can never get rid of the memory of being called “ungrateful”, and “bitch” by a family member or two.  I don’t mean to come across that way but I guess I say the wrong things in the wrong way. 
I want and need to be loved and needed for who I am in spite of the way I come across.
I can’t always get the words out the right way especially on the spur of the moment. 
I want/ need a lot more support in my life.  I am on a wait list but will likely never see the support.  There are people you can pay privately but we aren’t millionaires! I will have to make do with the way things are.
I could really use support with even regular everyday type things like getting gas for my car.  I have to go to the one full service station in the area.  I need help to learn to get gas at various gas stations.  They are all slightly different and that is enough to cause me severe anxiety.  It is a major problem for me.  People think it's funny that I can't go to a car wash or even pump gas. I do get self-serve gas if I really have no other option (very rarely).  I have to stand there and carefully read all of the instructions- that's where the reading comprehension disability comes into play (it takes me a while). Then I have to go step-by-step to follow the procedure and hope everything works as it should. It doesn't always. I get told, “It’s easy”Not for me!
I want to stop feeling stupid because I can't understand what someone has said or written. I have been told that I am not stupid, but if that's the case, then why do others make me feel that way?  I know I have processing differences but it is hard not to feel stupid.
We want and need to not be treated like children. We may have different ways of communicating and being, but we still need to be spoken to and treated in age-appropriate ways.
I had moved out and was in my 20s but was still being told what to wear and how to act, such as having to wear a dress and no crying at a memorial for my grandmother.  She was my first close family member who had died.
If we really want advice, we will find some way of asking or you can ask if we want advice. Please accept our answer if it is no.
I want to be included in activities, even if I say no many times.  There will be a time when I may say yes.
I think the one big thing I want and desperately need in my life is to be free of anxiety. 
I like my Autism.  It is an important part of me and if I had the support and understanding I need, I could do so much more in my life because my anxiety would be lower.
I want love, understanding, and support for all autistics to reach their potential to be the best they can be.

Tree in our front yard after the ice storm in December.

Tuesday, 18 March 2014


What Micah writes about today in her blog post is an example of the communication problems that we can have as autistics.  Her posts have been good for informing us of what she is really feeling.  It can be easier to write than to speak, especially when the words don't come out properly.  Her new therapy, equine psychotherapy, starts next week.  Hopefully this will be the right fit and she can get the help she needs to feel better.

Saturday, 8 March 2014

Disobedience to Independence

I have discovered that sometimes Micah's disobedience seems to make her more independent.
Today she had her treat of smores early.
She then couldn't make up her mind about what she wanted for lunch.  Her father offered to take her out for the soup she loves but she has been refusing to leave the house for most things, especially restaurants- understandable since they are noisy, smelly, and busy.  Basically they are full of anxiety.  Sometimes in the past she has gone but right now her anxiety is too bad. 
After the soup offer, that is all she wanted for lunch and her father would only do the soup if she went to the restaurant.  So, no soup.
He left the house and she was still after me for the soup, even after he came back she was still wanting the soup. 
I had one other lunch suggestion that I hadn't thought of-- pancakes.  She thought that was good and asked for chocolate syrup on them.  As she had already had her treat, I told her she could have regular syrup (sugar free).  That was not acceptable to her and we went back and forth with it for a while.  I suggested a compromise of syrup on one and chocolate syrup on the other pancake.  Still not happening!
Finally Micah said that she would be making her own pancakes and she would be putting chocolate syrup on them.
I waited to see what would happen.  Most times she gives up because she hasn't ever had much interest in cooking and therefore knows little about it.
She actually started to make them.  The only thing I did was set the griddle at the right temperature and tell her how to substitute for the egg.
She cooked her pancakes (I did tell her when to flip them) and then of course put the syrup, that she was not allowed, on them.
She thinks she got away with it and technically she did but what she hasn't thought out is that I can hide the syrup when she goes to bed or just not buy anymore.  I have chosen the latter of the two!
I could have tried yelling at her or tried to take the syrup away before she started but that doesn't work and ends really badly.  We have had much experience with those strategies.  They don't work!
I am getting better at trying to think up other strategies that don't cause as much anxiety for either of us.
Once or twice before, she has gotten things for herself, like getting ice cubes and water from the fridge.
The bonus of her disobedience with the syrup is that she is also learning a skill--cooking for herself!  So it's not all bad.

Wednesday, 5 March 2014

Micah's New Blog Posts

Micah hasn't been able to write her blog for a couple of weeks due to increased anxiety.  She hasn't been able to do any of the school work I give her either.  This week things seem a little better for her.
Here are links to the two (!) posts she wrote this week:  and
I think she is a much better writer than me and better able to explain her feelings!