Insight needed from autistic adults

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You are so welcome. Like I said, I am not an expert at all and I but I do know how I feel and what helps me. So it would be great to try for him. And I am sure it can't hurt. Please keep us posted on how he is doing and if you learn anything that helps. I am sure that many parents of Autistic children who are similar to your son would be very grateful for anything you learn and share.

TheSperg, I am glad to have read your post. I know a family with a nonverbal Autistic child who is fairly unresponsive and this would very helpful to them. I will pass your post on to them. Thank you for sharing this about yourself.

Thank you so, so, so very much for sharing your experiences with me. I pulled him out of that AWFUL preschool because I was told he was "intellectually disabled". If they could be that dismissive of him in my presence, how would they treat him behind closed doors, when I wasn't around ?

Did you understand language completely before age 6 ? Could you share (if you can) what changed when you turned 6 and started communicating ? I am BEYOND desperate to have a relationship with my son. It is devastating to not be able to reach him and any advise you can give me would help (although I know that every kid is different).

I don't know what it was exactly that allowed me to make the connection that I could talk, before that I used made up words which I think are called jargon and only spoke to my parents.

I do know I understood far more than people thought, I was content just to observe most of the time. It seemed I was learning in an odd way, like if I filled up my database with observations eventually I could copy it. Hard to describe. My sisters friends assumed I was mute, it was funny once when after weeks one of them could not understand how to work the cable box so I walked up and showed them. They were freaked out heh.

I would say don't lose hope in your son at his age, you don't know where he will end up as an adult.

http://www.techterms.com/definition/flaming

I don't think you should worry too much, he's only 4.

Parents spend to much time worrying about little things these days.

Hi, Im only self-diagnosed but I thought i might be able to help. When I'm writing, I often get onto the subject of how my brain could have been better- what could people have done to help? Luckily my mum was amazing and I learned a lot about conversation from watching her, but I'm sure I could have achieved ANYTHING if people knew my brain worked differently and INDULGED me a bit.

One thing that was sooooo frustrating as a child was being treated as one. I felt like i knew better then them much of the time, and understood more, but that's because when people talk to a child they simplify things until they don't even make sense, like "kids like playing together" when I knew I didnt. Id rather someone prepared me for the worst than lie to me, so a better response would be "I know you don't like playing with them much, but it'll help you be more sociable and assertive, everyone here will be happy, and we'll go for ice cream on the way home". It would've linked me to the bigger picture- that in the long run it wouldn't be too bad, and it was worth living in their world.

Try to always explain the meaning behind something, using links to his interests eg "oh, this farm animal is fluffy like your toy, do you want to feel?", (do this verbally and in your own brand of sign language. Dont feel stupid making it up- your child can read your body language more than anyone, and who cares if your word for "bird" involves flapping your wings, making a beak and running about- your child will remember it haha. Then set the example and allow him to join in only if he wants to. "I think your toy would like you to do this" (personification may work well or be seen as "stupid"), or restrict newly discovered, special toys/items/food etc for particular activities or times of the day, in a routine way, before he gets used to having them all day. As long as it is routine that he does something you want him to do, and it always leads to something good when he makes an effort, he'll make an effort. If you play his favourite music every morning while he has to get dressed, getting dressed will eventually become a bit more fun/easy.

Always show interest and excitement in as much as you physically can. Go to a play park and don't just sit there watching- If they will only slide, get sliding and talking about it- if they see you copying them, enjoying it, then relating it to something else, theyll pick up on it and may start to think its a good idea to copy you, eventually! If a child likes spinning around, for example, get involved and ask if they can spin with their arms up, or spin nearer the floor, and gradually, day by day, introduce different repetitive movements. The more each gets expanded, the more diluted behaviours will be and the more balanced his skills will be. Widening the field of interest is the only way to get balance in life. We should all try to understand things that have not instantly resonated with us. I hated maths at school. but now I feel like Ive missed out on any excitement because no-one explained "how" or "why" we were writing the equation in the way we did. When I recently linked more mathematical theories with WHY they were found, what real-life problems they could apply to, maths is actually enjoyable.

Keep in mind that your boy is looking at things from a completely different perpective to you, different priorities, so you need to find out what they are and USE it to teach him what to do. It doesn't matter whether he expresses his priorities using speech or just "feels" contentment for knowing/experiencing more from something. For example, experiment to find out what about those toys he likes- is it the sensory love of fluff? the fact that it sounds different from the other toys? Look at it from every sensory angle, then every conceptual angle, to see what makes him tick. Instead of discouraging a repetitive behaviour, expand it until it is more socially acceptable:

Once you know what his main passions are REALLY, what's behind his "tastes", you can begin to engage with them and expand them. You have to always use more personal, positive encouragement than negative, as we see some of the negative things differently, like "people are looking" or "you'll go to your room". They are external pressures and are irrelevant. What matters are concepts and experiences.

The worst thing you can do is never discipline him, you just need to do it in a clearer and less emotional way. Tell him how a behaviour will effect HIM first, then relate it to his loved ones, then to other people, then instantly turn to the correct, positive behaviour and explain why it is better... for them, his family then others. Dont preach, just explain that this is what is acceptable and why- how come it came to be like that? Change will be slow at first, but will pick up speed as more links are made, like the branches of a growing tree growing from each other and spreading out.

Also, I hate people worrying about me- if other people are crowding round saying "oh dear, what wrong?". I take on the emotion and feel like there is something wrong with me, which makes me more insular and unstable. So let him really enjoy his childhood and really expand on his strengths- They will all be transferable skills for his future.
The final thing is the most important- NEVER lie to someone with autism. If you're doing something they dont like, just tell them the REAL reason, dont sugar-coat it more than is necessary. They will KNOW faaaar more than comes across, but this is why you were testing his skills- you KNEW he was more capable than showed... and you were right

I want to add that do not overestimate how emotionally or socially mature your son is, or assume he knows something that is obvious and self evident to most people.

A sticking point with my father disciplining me, and my wife and others dealing with my son, is they incorrectly assumed he MUST know what he did wrong and they were not going to pamper him by explaining it. But I didn't know, and my son obviously does not know! And then they assume because the discipline makes no progress that me/my son are being intentionally obstructive.

I would advise to always make sure your son is clear on why what he did is wrong, explain it to him clearly, and explain the reason for the rule. Even if he is non-verbal do it still.

And getting him into the routine of doing the proper thing is worth a million times more than threats or disapproval, for whatever reason NTs idea of discipline doesn't work on autistics.

Maybe it's the attitude that's the problem. They should be trying harder to reach him if they think he's intellectually disabled.

Don't panic, stay calm. Anxiety in people around drives kids further into themselves. Just keep trying, believe in your child and love him for who he is now in the present.

It seems to be me that your child's pattern recognition skills are going great!! My ex's son (AS dx) was incredible when it came to finding our candy stashes, because the household was pretty cluttered and it was impossible for us to find our own things some days.

My mum said I was always as good as gold as child and people used to tell her I was a credit to her.

I always behaved because I was so scared of getting told off.
I have memories of being with my mum at her friends house and playing with her sons fire engine toy, I thought I had broke it so started crying just at the thought of being told off.

I always tried to do the right thing because I was to scared of getting it wrong, I was so scared of getting stuff wrong that often I would rather not try. (I'm not talking about tests here but every day stuff)
I am a very logical thinker and have always enjoyed practical toys like lego and anything creative.
I believe as a child I was adventurous to a point but not outgoing.

if you hid someone of mine I would certainly have had a very curious and inquisitive mind that would have been able to solve the problem with logic.
autistic people generally are very good at figuring thinks out on their own and understanding how things works. (I used to take apart all my toys to discover ow they worked to lol)

It's like autistic people have a thirst for knowledge their minds are like a sponge that just want to absorb anything about s particular subject and these often come in learning phases.

I usually have 1-2 interests at a time before moving onto something else, I think people with aspergers are supposed to be different and pretty much stick to the same interests for life?
I'm sure other people have totally opposite experiences of childhood though.

You might find this web page rather interesting http://www.snagglebox.com/article/autis ... l-thinking
What does it mean to think literally, and why is it common in autism?

And here's another about literal thinking in ASD children
http://www.myaspergerschild.com/2011/06 ... nking.html

BTW even if your child is autistic I'm sure he's in there but just so shy and full of anxiety that he doesn't feel like he can come out.
I can be almost silent around people even when they have known me my whole life and if they didn't know me they would probably assume I was dumb and nothing was going on inside my head at all.
at school I always felt really embarrassed and awkward so tried to avoid anything that brought attention to my self and I'm pretty convinced I was exactly the same as a toddler.

Don't get to worried about your son yet it's good that you are trying to find out at a young age but don't worry yourself to much and lose sleepless nights over it just yet.

He might end up totally normal.

Thank you ASpartofme. That is a great site too. Thank you for the link.

Hi HisMom. This message is probably going to be very interesting to you, but lets go into this one little step at a time and begin to connect these ideas in such a way as to make a bridge of sensation between the physical body of your loving self and the physical body of your son so that the great love you feel for him will carry over that bridge of sensation in such a way that your son will want to give back to you and by doing so touch the world and connect back to himself. Never overestimate the power of a loving mom to touch and connect with her own child.

First, good for you for doing this experiment with the stim toys. The creative mind experiments and discovers all kinds of solutions. Stimming is what engages him, so I suggest to you that you begin to build up a world around stimming but in such a way that his stimming offers a sensation pathway back to the world. Since he loves the language of stim, I suggest you experiment with speaking to him in as many ways as possible using the language of stim and so engage him in such a way that he will begin to use the language of stim to communicate with you and the world.

I have many ideas here about how to do this. I will try to read all of your messages on this system to get a better idea about your son, but I have to do my taxes, so may not have time today, but if there is anything you would like to share about your son that you think may be helpful such as his daily routine and what he likes to do---I did read one message and you mentioned music...so what kind of music, how does he respond to it, etc.?...does he like t.v.?...what kind of food does he like?..., anything, if you care to share....then maybe we can create a some kind of program involving repetitive sensation to engage him and perhaps begin to discover a way to connect to the larger world....

One key thing I am very interested in is your child's speech. You said in one of the few past messages I did have time to read that he did have speech and then stopped at around age two, as I recall. How many words did he speak, what words, at exactly what age did he stop speaking....that kind of thing and anything else you can think of, if you care to share. I have read that many autistic children begin to develop speech and then stop at around age of two. This is very interesting to me.

I almost missed this until I read your message for the third time. It just passed right over me. This is why I advise people to read other people's messages more then once and to really think about the idea content before responding. The key word here for me that I almost missed is "portrays." This is in no way to criticize your use of this word, but the choice of this word opens up an interesting doorway into what this child actually understands and does not understand and what you think and feel he may or may not be understanding, so how you are perceiving him.

For those who told you your child may grow out of this, that is very kind and offers hope, but imo there is a precious window here, not to suggest you cannot do anything to help later or at anytime in the future or that he will not grow out of this, but this time is crucial. Do not communicate stress to your child or build it up within yourself. Relax and take good care of yourself and your child, yet stay focused, poised and clear minded, as the younger he is, the more pliable his mind, and four is a particular age when many patterns are beginning to set.

Last edited by littlebee on 02 Apr 2014, 11:38 am, edited 2 times in total.

AlienorAspie I wish you had been in my life when I was growing up. What amazing insights and advice. Your post should be in the reference library I think.

I agree with TheSperg who said that you need to be very clear about telling him when he does something wrong. I still struggle with knowing if I did or said things wrong and I try very hard to be "good" and that can cause me stress. We don't automatically know a lot of the things NT's "automatically" know about the right and wrong things to say or do so you might assume that we know something when we don't. And like many have said, it works the other way too. He knows a lot more than you realize he does. But until he starts to communicate with you it's hard to know what he knows so always err on the side of caution with both sides of the coin. And also keep in mind that his sense of detail and vision and hearing and other senses are most like overly developed. So especially with his hearing, I would be very careful what people say when he is anywhere in the vicinity. You may think that he might not hear you whisper or when you are in another room but he might be able to.

Little Bee, I am also intrigued and excited to see what kind of ideas you come up with. This is such a great thread and may become so helpful to so many parents and teachers.

thankyou, that means a lot with what I'm dealing with at the moment. I've started to write notes and might write a short book sometime :/ I can obviously write a lot, but will have to whittle it down to get anything sensible haha.

I believe we retain the learning style of small children- in that we make a lot of brain connections very quickly, in response to stronger emotions and sensory sensitivites we don't understand how to cope with. Most people haven't realised that the basic principles of parenting (encouragement/care/soothing tools) can be applied in a much more complicated way- to help us overcome our sensory and understanding differences, even with our adult responsibilites built in. We just have to keep the learning as useful and varied as possible. Never rule out any interest based on what you think you/your child wouldn't/shouldn't be interested in. Literally anything could be a future career/money maker or further human understanding. My mum parented me amazingly, but didn't know how I felt or thought as I faced new difficulties, and if she'd known how to give me as much info as I needed, and encouraged me to achieve/understand more, it would've been easier for both of us. Im making a plan for myself (now I understand how my brain works) but i really would prefer to do it for others going through what I did as a child- to help people realise what we need to live a full and happy life.

My plan is wear wear as much comfortable/protective clothing as needed (to help me to do daily tasks), to make lists and colour-code everything in the house, with little post-its around the house to remind me for a while. I plan to get myself an economic daily routine (get up, have breakfast, feed animals, shower, brush teeth, do hair, tidy kitchen and put clothes in the washing machine...) and really stick to it, then once im achieving this I'll make a weekly plan (monday-tidy living room, tuesday-yoga class...) and work from there, incorporating all the things I need to be able to do to be happy. I already know how to deal with change, so I am trying to get more of a balance with routine.

I think all NTs and Aspies, children and adults alike, would benefit from feeling like they have more control over their lives, or from having more varied interests, insights and experiences to make social/life decisions with.