Thursday, August 18, 2011

Things you wish adults knew when you were a child. The following are direct quotes from many adult autistics.

Now that it's time for school to begin I thought that I'd share a document that I put together a couple years ago about things that adult autistics say they wished their parents knew when they were children.  I always print and share this with my boys' teachers and principls. They say that it's helpful in understanding them.  Please, feel free to copy and share this where ever it may be useful.  I'm not a computer wiz, so I was unable to convert the Rich Format to HTML code on blogger, so this is in plain text.  The original document  (WHICH CAN BE FOUND HERE IN PDF) is much nicer and easier to read. You can also ask me and I'll send you a copy via e-mail if you'd like.  I had a lot of fun collecting all these tips from my fellow spectrum friends on WP, FB, and other places.  Many of us are more than willing to share and help when asked.

Things you wish adults knew when you were a child.
The following are direct quotes from many adult autistics.

"When your kid forgets to do something they said they would do--they really did forget! I still do. Smile

My dad always urged me to "buckle down". Neither of us knew at the time that my "buckle" was broken, and although I had the best intentions, I didn't know how. I wish I had had specific, detailed, step-by-step directions on how to get those things done that I didn't know how to even start.

Don't expect your kid to infer anything. Just tell them. They are not ignoring your wishes or your needs. They just don't get it. Tell them and be specific. Tell them when they are doing it right, and if they aren't, calmly point out what needs to change. And if they overreact to that, just let them. In the years to come they will pick up some moderation. (Some.) It's not personal."

"Im still very forgetful, AND I don;t clue in to non verbal cues, so whoever thinks Im a "creep" because I dont clue in, they should do some research first before jumping to that conclusion.They would find that I would do as they have wanted if they clearly spelled it out for me verbally."

"Don't assume that just because I'm not looking at you that I'm not paying attention. I often will concentrate on what you're saying better when I'm looking away from you.

P.E, was torture for me. I am not coordinated, nor will I ever be. Some of my worst memories come from P.E. class. It really hurts a child's self-esteem to always be the last one picked for teams. There has to be another alternative rather than to put ASD kids through that."

"Always be positive!
Treat them just like any other child- they just want to be normal.
Give them special one on one attention. I thrive for that!

Dont hold them back- it keeps them from their full potiental. They can susprise you."

"I would always draw or play with the stuff in my desk or something during class, but I still heard what the teacher said. If I tried to just listen and sit still, I would drift off and start thinking about other things, because it was not stimulating enough to just listen.

Also, sometimes if I didn't have a sufficient explanation for why I should do something, I would refuse to do it. So I think I would have done a lot better in school if the teachers had explained a lot more, because they often didn't have good reasons.

And I think something else that would be nice is if teachers would sometimes tell awkward kids what they might do to not get teased as much. I don't know, maybe they're not allowed to do that for some weird reason, but I think it would be nice, since they're the ones who see the teasing happening."

"Don't attempt to make me look at the teacher when I am trying to pay attention. I can do one of them.

Don't make "choose a partner/team" group work mandatory this does not only refer to PE. It is horrible if everyone finds a partner immediately and I stand there and everyone does not want me.

The noise during recess was far more stressfull than the classes. I had to calm down from recess in class."

I don't always know what I'm doing is impolite, and I can't always control it (ie. laughing at inappropriate times).

Sometimes I don't speak because I REALLY don't know how to answer the question, and the MORE you try to force me to answer, the more intimidated I get, and the less likely you'll get an answer.

I get into a lot of trouble for defending myself in fights started by someone else, because I'm not as verbally skilled, and can't talk myself out of trouble like others. Don't automatically assume I'm in the wrong just because I cannot come up with a convincing -story-.

I don't always know when I'm being impolite, I just say what's on my mind, please don't make a scene out of it, just explain to me my mistake in private.

Sometimes when made to talk to the entire class, make a presentation, or when told to share ideas with the class, I get nervous, I stumble over my words, and I can't think clearly, which is why I usually cut the speech short, it's not because I'm not participating, it's because I'm terrified I'll make a mistake, and get made fun of by the whole class. You questioning me in front of the entire class as to why I won't participate makes me feel like crap.

Please be direct in your speech, don't use metaphors or sarcasm when asking me to do something, 99 out of 100 times, I won't get what you're asking of me."

"So many things...

Not stopping doing what I was doing when I was told to stop doing it.

Doing the same thing over and over and over despite being told not to do it.

Not looking at people when I spoke to them.

Speaking to people in a way that they interpreted to be condescending / patronising.

Not being able to make out what the teacher was saying because there was too much background noise.

Doodling constantly during lessons.

Doing things I wasn't supposed to be doing because I had finished my work and was bored.

Doing things I wasn't supposed to be doing because I didn't find the work interesting.

Not understanding things because I didn't understand the way the teacher explained them.

Not understanding things (especially maths) because of thinking too deeply about it.

Not liking certain lessons because I didn't like / get on with the teacher.

Never reading any books (I seem to have a bit of an issue with reading and tire of it very quickly).

Not understanding what behaviour was appropriate for my age.

Not having a clue what people were going on about when they started fancying other people and all that.

Not realising that I needed to be proactive to make friends.

Team sports were always a problem for me.

Also dance and aerobics involving copying moves off others was and is still a major problem for me.

That said, I'm totally fine at certain sports, such as running (but not sprints), swimming, climbing, dance (making my own moves), javlin, discus, shotput, cycling and also going to the gym don't cause me any problems. I think the key with sports is to stick to what you're good at. "

"Don't talk down to me (when I was a child and people used that sing-song tone it made me cringe)
Don't assume I ought to know something-inform me politely
Don't assume because I don't approach you that I want to be alone (that's a tricky one-sometimes I do) I don't know how to ask to be a part of a group-I'm afraid of rejection and need to be asked.
Don't assume I'm lazy-I can't focus and trying makes me very tired
Explain to me what I did wrong socially without attacking me"

I remember when I got in trouble for something I'd get the stern "look at me when I'm talking to you!" and dread it.

Negative reinforcement only pissed me off. I still have a grudge against my grandfather and he passed away over a decade ago. The horrors I went through with him...

I had a horrible time in school to the point where I was scared to death to go back. At that age I had no idea what to say, so I just cried. If only they knew how emotionally damaged I was. My grandmother said she could never understand why I flipped out. My mother, on the other hand, picked up on it. I ended up moving in with her after that situation. I changed schools, but I still went through a lot of problems.

Being constantly nagged to do things never helped me want to do them. Asking kindly would have made a world of difference, but parents don't think they should have to do that. Plus, back then, we had no idea what Asperger's was. My mother just said I was eccentric.

I remember when I first heard the band Rush. I obsessed over them for months. My mom thought that was insane, but their music was so complex and intelligent that I couldn't stop listening. It would have been nice to have a diagnosis back then, cos so much emotional stress could have been avoided. I wouldn't have been yelled at for my obsessions and odd behaviors."

"Maybe true for all kids, but when a kid says there is nothing wrong, they are likely lying.

The only way to get a kid to tell you the truth is to become someone they feel they can trust. Only then MIGHT you find out what's going on inside of them."

"Even though my parents knew that I was on the spectrum, I wish that they didn't do these things:

Things would have gone a lot more smoothly, if they didn't spank me. The only thing that I've learned from those spankings, was that it was okay to hit and punch the bullies, when they picked on me, and called me "retarded". They never did that again, though.

I wish that they would have let me talk about my special interests, at least at home, instead of getting angry at me, for doing so, no matter how much I talked about them. I didn't talk to any of my peers in high school, because my mum said, "As soon as those kids find out what you like, they're going to bug you about it!" That's what led to all that posting about Routemasters at WP in 2006. I've kept that obsession a secret from everybody that I had social contact with, off-line. One member tried to make me his project, by training me not to post about them, so much. If he only knew what I had to go through, and the many headaches, colds and flues that I've endured, just by keeping my special interests to myself, for so many years, he wouldn't have done that. My parents wouldn't have done that, either.

I also hated that "Look at me when I'm talking to you!" by my father, who I didn't trust at all. If he knew that I didn't trust him, he wouldn't have forced that eye contact. He would have treated me in such a caring way, that would have made me feel that I could trusted him and felt at ease with him to begin with, and than I would have given him that eye contact.

Some people on the milder end of the autistic spectrum appear to speak with a foreign accent. Mine happens to be the London Cockney. My parents spiritually abused me the entire summer that I was 12, by telling me not to speak with a nasal sounding voice. The following spring, I've told my mum, brimming with pride, that I have a bit of a Cockney accent. She said, "We can fix that." She changed her tune in a hurry, after most of my teachers wrote that I won't speak to my regular classmates, on my first high school report card. She asked, "Did anybody say anything about the way that you speak?" I said, "Yes...both you and dad did, two years ago." She said that she was sorry that she caused me so much pain. I've started talk to my mum and dad nonstop, again."

"it would have been really nice if:

my mother accepted that I'm a literal thinker, instead of getting frustrated and criticizing me, as if I were choosing not to understand her vague instructions.

my mother encouraged me and gave me some praise for what I did right, instead of focusing on what I did wrong and going on and on about it.

schools made kids like I was safe, which probably means keeping us away from bullies. it wasn't so much of a problem in grade school, but it got worse and worse as I got older until I just quit going to school.

schools provided behavioral classrooms as a matter of course, to assist kids who need coaching in personal hygiene and social skills."

"Don't sit me by the loudest kid in the class.

There was a boy in my class that must've had ADHD (severely) and he was always making noise, and touching people, and running into them. Those three things are probably at the top of my list of worst sensory issues. It seems that the teacher always sat me by him. My grades went down, because I couldn't concentrate, and my anxiety skyrocketed. It got to the point that I couldn't sleep at night, because I was so afraid of having to deal with this kid at school. He knew that touching me bothered me a lot, so he did it even more, because it was fun to him see me have a meltdown. I don't see how the teacher didn't notice all of this. I've seen this happen with my 7 yo son, too. I don't understand why the teacher can't make more of an effort to keep these kinds of boys as separate as possible from my son.

Oh, and it never even once occurred to me to ask for help with this issue. Sometimes, you have to pay attention to what 's going on with ASD kids, because they won't think to tell you about their problems. If someone would've thought to ask me, I'd probably have told them how much it was bothering me, if I could find the words, and felt comfortable talking to the person."

"Even when an autistic child is comfortable about telling something, it may still be impossible to ask the child about certain things. Often these things are information, skills or feelings the child experienced or learnt in another situation or another environment (school, home, kindergarten, club).

It is perfectly possible that if a teacher asks an autistic child about home it does not seem able to tell any or correct information. It is also possible that a child wants to tell something about school to his or her parents but simply cannot.

I'd also add in specific:

An autistic child may be perfectly able to do something in one situation and/or environment, but truly unable to perform the same skill in a different situation/environment. That everything from knowledge to learnt skills are only available to the child in certain situation is a difficulty that can come with autism."

"I wish that my teachers had realised that having hundreds of kids sitting in grouped tables, chatting away and having to cooperate was overwhelming for me. I'm willing to bet that some of my relatives (had they been young children during the 90s) would've had trouble coping with this set up too. Back in the old days it was single rows of silent desks. Back then, socialising was strictly a recreational activity.

I wish they could've realised how the school environment made it difficult for me to learn.

I wish they could have realised that my strengths (observing, analysing and recording the physical environment) were not being put to best use.

I wish that they could've realised that I was a caring person who feels deep emotions, but was socially clueless, so inadvertently offended people. I can read some facial expressions, so I wish they could've realised that I was not a completely "cold" asocial "monster".

I wish they could've realised that my out-of-sync movements during PE and dancing were not willful: I genuinely couldn't sync up with the other kids. I also felt an insatiable urge to do my own thing and develop my own style.

I wish they could've realised that I wanted to join in.
Actually, I wanted to join in and lead the activity in my own style and wanted to teach the other kids things without them telling me to "Shut up".

I genuinely wanted to be friendly and not upset people.
In fact, I was very concerned and felt very upset when I had inadvertently upset others."

"The whole choose a group or partner for a group activity was the worst.

Bullies are also a horrendous problem and a zero tolerance policy needs to be in place to deal with them. I remember being told everything I shouldn't provoke them (I didn't) to I need to stand up for myself (kinda hard when I was barely chest height). Teachers need to realize that yes some bullies have problems at home or something and act out by hurting other kids, some however are just sociopaths. There are no differences to work out (I've also been told to work out differences with bullies, seriously how stupid are some teachers) some bullies just like hurting other people and aspie or autistic kids make excellent victims for them. (I have very strong feelings about bullies)

I had one class where the teacher played music in the background, while the music was nice it was rather distracting. That might just be me though.

I actually calm down by moving, walking/pacing in particular. Trying to hold still just makes me agitated.

Just because it might take me a while to form the right words to answer a question doesn't mean I don't know the answer, or if I'm in trouble for something, that I'm lying or making a story up. I'm still working on ordering my thoughts so I can communicate properly. (I have a vague memory of being told something along the lines, don't sit there making something up, just answer the question) "

"This is a tip that goes for me:

If you are explaining something to me then ask, 'do you understand?' don't assume that my answer 'yes' means I DO understand. My hearing can only pick up certain words of speech (auditory discrimination issues) so my mind puts two and two together to get 3 most of the time! If necessary, write the thing down. This way it may be more comprehendable. Hope that helps!"

"That strong staff leadership and a sincere inclusive ethos can make all the difference.

That clear rules and guidelines can help a person know "where they stand" and what to expect.

That inconsistencies and "rules" that aren't spelled out clearly are confusing."

"That when I repeatedly said, yelled, and pleaded for them to leave me alone, that they did so instead of continuing to yell at me through my closed door. They caused so many meltdowns, rages, etc. that way. That's often an aspie's only way of expressing that they're becoming overwhelmed. It's a last-ditch effort to avoid losing control. If parents don't recognize and respect this, they will be largely responsible for the resulting "bad behavior". Parents of people with Asperger's need to learn when to back off and allow them to calm down.

People with autism frequently respond with more basic emotions than other people. Harsh tone of voice or a demanding attitude will often result in a heavily defensive response. If you want your message to be received, and to not result in the opposite effect, it is important to remain calm and polite. Whereas a non-autistic person may take a harsh tone to indicate you mean business, an autistic person generally interprets it as an attack and responds as such. This can result in an argumentative or hostile response.

People with autism frequently need to mentally prepare themselves before doing something, and also frequently have a poor concept of time. A timetable of "Now" causes stress, frustration, and anger. It is far better to give them a few minutes' warning and / or early reminders to allow them to prepare and be ready."

"The one that stands out is I wish my parents knew that just because I asked unusual questions about sex at a really young age didn't mean that they should panic and ban me from reading encyclopedias. "

"As a child, I always wished that the people who said, "You know you can always talk to me," understood that just because I didn't talk to them, didn't mean that I didn't want to talk to them. I couldn't. I had (and still have) problems organizing my thoughts and getting them out. Just be patient and I will do my best.

This one is especially for the teachers: when asked about my emotional state and I say, "I don't know," I really don't know. It's almost impossible for me to know what the heck I'm feeling and it is nearly impossible to articulate it.

Usually when I lose it, I'm blamed for my destructive behavior and never allowed to explain myself--even if I could. And never let your child feel guilty for something that was not their fault, nor let your child feel guilty for what they do not understand because that guilt will stay with them forever.

Also, most Aspies tend to have a long memory. My first memory is being in a crib and crying for someone to come to me. And then I heard my mother's voice saying, "Shut up!" To this day, I can't get over that. "

"I wish my parents knew that stimming is natural and important to me; that I need to do it."

"I recently made a list of things for my son's teacher that I wish my teachers had known. I got so tired of being told not to be a tattletale about things that were CLEARLY wrong, and I stopped and shut down with talking to my teachers altogether. "

" if I put my hands over my ears when you start whistling a song to yourself, or you want me to sing a song with you, or anything of the sort, know that maybe I just *can't* do it. It's possible that the whistling actually hurts, or that the extra auditory input of the sound is just too much. And quit tapping your pencil on the table if you want me to a) be sane and b) focus on anything else!"

"to consider face blindness and keep a 'signature' about themselves so they can be recognised and to use gesture and objects where possible and speak in bullet points."

"In a tense or stressful situation I may start to shut down. This often means I don't know how to handle or process all of the stimulus around me. Help me to see the light at the end of the tunnel and understand how I can be involved in the event."

"As a school child my world was hard enough and then I entered that huge empty echoing place, with so much noise I could not hear, I could not focus and impossible to read a blackboard if I you dare look, because if I did look up, someone laughed, made fun, yet more abusive. At times so unbearable, but no place to hide I had no choice but to endure. What the other children enjoyed and talked about, made me feel more of an alien.."

"I wish that teachers knew that I needed extra guidance. I was pretty much dropped off at school at 5 years old and expected to 'figure it all out'. That might work for some kids, but it just made the world a chaotic place for me for a few years there. In fact, what should have been done, was indeed done later when I was 9 years old... I went to a new school and one student there was asked to show me around and let me know how things worked, and where everything was. The difference that this made was like night and day. I thoroughly enjoyed my time at the new school, and excelled as a student as well.

I had a hard time making sense of the big picture as a child. I could figure out what was expected of me from moment to moment, with a little effort, but understanding how each part of my day made sense on a daily or weekly basis was impossible. A kind of tunnel vision with regard to my own life. A very narrow understanding. Experts tend to say that Asperger's children need structure, maybe these sort of difficulties are the reason.

I also wish that my parents knew that I needed personal, private time (grew up in a large family), and that noise was something I was extremely sensitive to. The home life that I had growing up was a pressure-cooker environment that made me a more anxious adult, I think."

"I wanted to have things set, and to stay the same. I did not like too much variation, fortunately perhaps in my childhood there wasn't much. Things are different today. When i was working as a teacher aide, my supervisor told me of an aspie boy who she had been helping. Technology classes at that school were taught in 'blocks' of ten lessons, then they were moved onto a new subject. For the first block, she took him into the room beforehand, introduced him to the teacher, who showed where everything was, told him what would happen, etc, he knew what to expect and the lessons went well. Unfortunately, she didn't think he would need the same when they moved on to the next block. He was so overwhelmed he spent the entire first lesson of the new subject sobbing in the corner of the classroom. Big lesson for her, and the other teachers."

"The biggest, please don't shout at me, if you do say sorry, please don't make me a spectacle, be kind to me, make me feel good about my differences not feel subnormal and less than human.   Listen to me.  

If just these things would have happened my younger life would have been less retched and less full of pain."

"I have difficulty answering this as I would say my difficulties emerged in my teens and further on.

I imagine (from the viewpoint of an older person) that an early diagnosis could have been helpful and I needed training not to take everything literally and to understand that authorities were just fellow human beings not enemies.

(Turning this around I suppose I wish teachers knew that I regarded them as enemies not because I was inherently nasty (although I confess I could behave that way to teachers) but because I felt they were trying to impinge on me by forcing useless information into me - I needed explanation as to why things were happening which was not of the "because I say so variety")

I failed to understand how teachers could make rules and then dislike people who told them other people were breaking the rules - did they or did they not want the rules kept, and were they or were they not responsible for enforcing them?   I still find this one a bit puzzeling. I suppose nowadays they try and get buyinto rules by getting the students to work them out at the beginning of a year.

I think the most useful thing I could have been taught was not to take books literally - that I needed to prioritise what I could learn  from life over what I could learn from books. I expected my life to play out like a novel and was constantly disappointed when it didn't. 

I think aspie kids probably need to have time spent giving them details of different points of view."

"I wish that everyone wouldn't have made such a big deal about my eating habits.  I still don't like most my food to touch, and I still eat only one item of food at a time on my plate.  It's not worth hassling a kid over.  I also have sensory issues with certain foods, mostly because of the way they smell."

I also wish that my parents would've taken my other sensory issues more seriously.  If  an autistic child is telling you that something is bothering them (that relates to one of the senses) take them seriously.  Don't accuse them of being over-exaggerative."