Question for those with Autism

[AverageJoe]

My question to you high functioning adults is what kind of things would you tell your younger self if you could? What resources or methods would you recommend to yourself?

I see lots of articles and videos on general autism awareness, but finding few resources for someone who might need some guidance in better navigating their condition. Can you recommend any books, lectures, etc., for a young autistic person to look at for guidance? Looking for resources that will assist them and not make them feel inferior or fatalistic.

For background, we have a (turning) 14-year-old son, that I am sure is somewhere on the higher functioning end of the autism spectrum, but until this point have not pursued an official diagnosis. I am thinking it is probably time (and ultimately helpful for him) if he were to get diagnosed/ informed about autism (you agree?).

For a variety of reasons, we quit pursuing diagnosis when he was younger, instead spending the time and resources on other activities and experiences we thought would prove more beneficial.

At this point we feel it might be most beneficial for him if he were to have a diagnosis and a better understanding of the condition. Then perhaps be introduced to methods/ tools he might find helpful in navigating adulthood. Thank you all for this community and for sharing.

 

[Bergs]

Great question, main advice would be that they are not alone and to research advice/information from people that are autistic, as some physcologist understandings are out of date.
Personally i have found Orion Kelly's "Autism Fells...An Earthlings Guide" useful (possibly because he is Australian, which feels more familiar to me). Also Devon Price's "Unmasking Autism" in book format. Then there is Youtube Orion Kelly(again) and Taylor Heaton(Mom on the Spectrum), for shorter format(also generation closer to your son) there is Tiktok and search by #actuallyautistic (then the algorithm will take it from there once they watch a few clips).
Knowledge is power, the more they know and you know the better it is for everyone.
Any strategies are more useful for coping/allowing time to deal with the world (advocating for themselves) rather than changing themselves to fit the NT world, if that makes sense.

 

[jsilver256]

I’d tell myself that anxiety is just my default state and explain what anxiety is. And that the world isn’t falling apart and to be careful to not to fixate on worries. But also that stimming, constructively directed fixating, and regulation (video games) are powerful built-in tools to manage all that anxiety.

 

[Judge]

To try like hell to better verbalize how you feel about those you care about the most.

Something that took me decades to come to terms with, when it was too late.

 

[Au Naturel]

My question to you high functioning adults is what kind of things would you tell your younger self if you could? What resources or methods would you recommend to yourself?

I see lots of articles and videos on general autism awareness, but finding few resources for someone who might need some guidance in better navigating their condition. Can you recommend any books, lectures, etc., for a young autistic person to look at for guidance? Looking for resources that will assist them and not make them feel inferior or fatalistic.

For background, we have a (turning) 14-year-old son, that I am sure is somewhere on the higher functioning end of the autism spectrum, but until this point have not pursued an official diagnosis. I am thinking it is probably time (and ultimately helpful for him) if he were to get diagnosed/ informed about autism (you agree?).

For a variety of reasons, we quit pursuing diagnosis when he was younger, instead spending the time and resources on other activities and experiences we thought would prove more beneficial.

At this point we feel it might be most beneficial for him if he were to have a diagnosis and a better understanding of the condition. Then perhaps be introduced to methods/ tools he might find helpful in navigating adulthood. Thank you all for this community and for sharing.

I have lots of things I'd tell my younger self. But unless it were me doing the telling, I would not have listened. Even then, the only reason I would have listened would be that future me already knew the outcome. Otherwise, it is an opinion of what might happen that I would have overruled with my own presumed superior intellect.

I needed someone to help me along the path I wanted to go. Smooth out the bumps, encourage me, praise me when I succeeded, and let me cry on their shoulder when I failed. Give me suggestions and not instructions. It didn't happen that way.

Get him diagnosed. Get him the tools and options that might help him.

 

[kriss72]

I would tell my self that I need to seek help, that there is an explanation as to why I struggle in school and feel like I'm so different I have to copy others to fit in. That it is ok to just be me.

 

[Outdated]

The only thing I would change is that I wish I knew about burn out before I was in my 30s, other than that I'm glad I didn't know anything about autism when I was young.

I used to train apprentices many years ago and what I saw in them I knew to be true about myself as well. The transition from teenager to adult isn't easy and most will latch on to any excuse they can to say "It's too hard and I can't do it." and "It's not my fault, it's because I'm black/gay/religious/autistic."

My advice would be to learn more about autism so that you can give your son the support he needs when he needs it, but to not give him the word Autism until he has adjusted to adult life.

 

[MNAus]

Honestly? Really honestly? I would have told myself to be far more selfish and not to assume people play by the rules.

 

[Misty Avich]

For a variety of reasons, we quit pursuing diagnosis when he was younger, instead spending the time and resources on other activities and experiences we thought would prove more beneficial.

That is a wise decision to make. If a child seems high-functioning and is capable of learning social skills along with his peers like I was, the better thing to do is not to slap on a label so early in life. It can cause distress and depression for the child to already have a label that none of their peers have, and can make them feel singled out or alienated. A child's mind isn't mature enough to handle a psychological diagnosis, and bombarding them with information on it won't make it any easier for them.
Childhood is the easiest time of our lives, and all children are vulnerable, dependant and socially inept to an extent, so as long as you're there for your suspected autistic child and they can talk fine and everything then let them be.

Waiting for the teenage years (or older) to assess them is best, because by then they might be struggling more and are at an age where they might be more able to handle a diagnosis and might even feel relieved or happy with it, but try not to tell everyone about his diagnosis without his consent, and just keep to a need-to-know basis unless he consents to more people knowing.

I say all this as a person who was forced to get assessed by social services from ages 4-8 and received a diagnosis at the tender age of 8, and nothing good came of it regarding mental wellbeing.

 

[NB79]

I would tell to not beat myself and suffer too much for things i can't do like socializing etc, and take more easy in those areas.
And that i have value as a person i don't need friends/contacts/social success etc to have value.

 

[marc_101]

@AverageJoe

Would you mind clarifying what you mean by "high functioning"?

Most use that term to mean of average or more than average intelligence, but intelligence is not part of the ASD diagnosis. A person can be very smart but still have many functioning problems.

ASD is about social interactions and behavior. And ASD is a very broad set of traits, so people with ASD are very different from each other.

If you have the resources, I'd suggest taking your son to a specialist (psychologist rather than psychiatrist). Diagnoses are fuzzy, so a good doctor could help you understand which problems your son has and what kind of tools you could use for his particular issues, which are unique to him.

My younger self would have liked to have received help understanding myself and problems, not sticking a label, unless the label helps address the problems.

 

[Neonatal RRT]

My question to you high functioning adults is what kind of things would you tell your younger self if you could? What resources or methods would you recommend to yourself?

I see lots of articles and videos on general autism awareness, but finding few resources for someone who might need some guidance in better navigating their condition. Can you recommend any books, lectures, etc., for a young autistic person to look at for guidance? Looking for resources that will assist them and not make them feel inferior or fatalistic.

For background, we have a (turning) 14-year-old son, that I am sure is somewhere on the higher functioning end of the autism spectrum, but until this point have not pursued an official diagnosis. I am thinking it is probably time (and ultimately helpful for him) if he were to get diagnosed/ informed about autism (you agree?).

For a variety of reasons, we quit pursuing diagnosis when he was younger, instead spending the time and resources on other activities and experiences we thought would prove more beneficial.

At this point we feel it might be most beneficial for him if he were to have a diagnosis and a better understanding of the condition. Then perhaps be introduced to methods/ tools he might find helpful in navigating adulthood. Thank you all for this community and for sharing.

1. A person will have to gain acceptance of themselves. Better to do this with patient and supportive parents. As a teenager, a typical initial reaction might be of rejection and anger because most teens don't want to be different from their peer group.
2. Learn as much about the condition from the medical model. The behavioral aspects of the condition are secondary to the anatomy, physiology, genetics/epigenetics. Know that it affects the neuromotor, endocrine, immune, and gastrointestinal system. This is handy information because then one can overcome this idea that some have that autism is a "mental condition" or that one is simply "neurodiverse". It's much more than that.
3. Learn about how humans are going to sense the autism without actually knowing that it's autism. They are going to pull back or go on the attack. This social aspect, if you don't understand it, is very confusing, frustrating, and can even trigger anger and depression. If there is any need for a psychologist, it's this topic. For a young autistic, there can be a deep desire for friendships, a girl/boyfriend, a life partner, etc. and it can be deeply distressing when that doesn't happen.
4. Learn about alexithymia (common co-morbidity) and the lack of posterior pituitary release of oxytocin and vasopressin, the "love hormones" partially responsible for wanting and maintaining human connections. If the person is lacking, then initiation of social connections, social reciprocity, maintaining friendships, is next to impossible.
5. Learn that there is a small percentage of people who will identify and target the autistic individual in order to take advantage of them, and harm them, mentally/emotionally, physically, and/or financially. Learning those skills of keying in on voice modulation, facial micro-expressions, body language, manipulative phrases, identifying toxic behaviors, etc. that might tip them off that "something is not right" about this other person.
6. Learn about "mind-blindness" or "theory of mind" difficulties. It's one thing to not be a mind-reader, but when it is compounded with a general lack of cognitive empathy because one isn't reading all the subtle, non-verbal cues, then all one has is one's own perspective. There can be a lot of cognitive biases and strong opinions, but ultimately, it's a life full of thinking errors. Going through life with only your own perspective is an absolute minefield of potentially surprising and confusing social "blow-ups". At the very least, one might be falsely accused of not having empathy, that one is selfish, that one is a total jerk.

At 57 years old, I have been through all the ups and downs, the frustration, the anger, the tears, the confusion. Water under the bridge at this point. However, as a teenager or young adult, it can be quite distressing if they haven't the life skills and understanding.

 

[Misty Avich]

@AverageJoe

Would you mind clarifying what you mean by "high functioning"?

Most use that term to mean of average or more than average intelligence, but intelligence is not part of the ASD diagnosis. A person can be very smart but still have many functioning problems.

ASD is about social interactions and behavior. And ASD is a very broad set of traits, so people with ASD are very different from each other.

If you have the resources, I'd suggest taking your son to a specialist (psychologist rather than psychiatrist). Diagnoses are fuzzy, so a good doctor could help you understand which problems your son has and what kind of tools you could use for his particular issues, which are unique to him.

My younger self would have liked to have received help understanding myself and problems, not sticking a label, unless the label helps address the problems.

High-functioning generally means:-

- The child has very little to no delays in speech development
- The child is less "obvious" in their social behaviours (their autism might be more internal, complex, or able to learn at an earlier age how to mask well)
- Most high-functioning children qualify for mainstream school rather than special schools (although some high-functioning children do qualify for special schools)

 

[Hypnalis]

@AverageJoe

I logged in to write something very close to @Au Naturel 's post #5, but it's there so I gave it a "winner" icon instead.

In principle it's possible to help an HFA. Many of the deficits that cause us trouble could be addressed quite easily.

But there are some major hinderances, two of which are:
1. Young Aspies are typically terrible students in the specific areas where help would be most valuable to them
2. It's very difficult for NTs to understand the issues faced by Aspies, so they're generally poor teachers for this

(1) has "negative synergy" with puberty (of course - young teens have many significant issues to deal with just from puberty). But could you do anything useful earlier? Perhaps, but not necessarily.
The odds are that you've already discounted (2) as not applying to you, but you're almost certainly wrong.

OTOH I doubt it's impossible to work through the constraints. But I think it's important you understand this cannot just be a matter of presenting some well chosen facts and a few hours of training.

For an Aspie, learning to "understand and speak NT fluently" is as much work as becoming fluent in a foreign language and learning the culture: say 1000 to 2000 hours.
And it can't be forced - the student must be willing and motivated.

You might be lucky of course, and I hope you are - your son may have started to understand his nature, and be eager for some guidance.

If not, I suggest you rework your plan: your biggest problem at the moment is getting "the project" off the ground.
That's what you should be working toward at the moment.

NB: There's nothing here about professional help. Others may have had good experiences.
I know some NDs (mostly family members) in their 20's and early 30's, and while they haven't been harmed by professionals, they haven't been helped either.
There are definitely professionals and treatments in the US that are likely to be harmful.

PS: I suggest you keep reading through @Neonatal RRT 's post #12 until you understand all of it.
Ask questions as needed.

 

[AverageJoe]

I sincerely appreciate all those who took the time to reply to my post. Each post truly highlighted something insightful that I felt we as parents should keep in mind.

Some of the comments were reminders that as parents we can always be better informed and equipped to support our child’s needs.

Some of the posts underscored my intuitive concerns. Particularly that the world outside of our home is not going to change to accommodate him, in fact as Neonatal RRT said “there is a small percentage of people who will identify and target the autistic individual in order to take advantage of them”.

Also, as Hypnalis suggested we as parents (and from what I have observed most professionals) are “generally poor teachers” and some can do harm.

I did come away with some new books and techniques to look into/ possible recommend to him.

Unfortunately, I also came away with the impression that there were not already well-developed techniques, games, etc. for learning the NT “language and culture”. I thought for sure helpful methods would have been established by now, No?

 

[marc_101]

Unfortunately, I also came away with the impression that there were not already well-developed techniques, games, etc. for learning the NT “language and culture”. I thought for sure helpful methods would have been established by now, No?

No, there are tools!! Many. It's just that you'd need to be more specific about what problems he has. And the tools change by age. Seek help from qualified people.

Also, take into account that we're not a randomly representative sample of people with autism. It's truly a broad spectrum...

Good luck and say hi to your son.

 

[Hypnalis]

@AverageJoe

A couple of "random" points to consider about tools and techniques.
For context: when I was 14, "Autistic" implied "couldn't take care of themselves", and confined to a care facility. I didn't fit the diagnostic criteria of the day, so I've figured things out on my own over the years. If there are any decent tools these days, I wouldn't have found them because I haven't looked.

1. I've always interpreted speech literally. Which leads to a lot of trouble, because much of what's said isn't literally true. For me, normal NT speech is comparable to another language that I speak fairly well but not perfectly. I don't exactly "translate", but I have to process it in real time to make sure I get the meaning right.
2. I taught myself how to do this as an adult, because I didn't learn it while young:
https://en.wikipedia.org/wiki/Smile#Duchenne_smileIf you're STEM educated, look at one of Sabine Hossenfelder's Youtube vids to see an example of someone with a good Aspie smile - perfectly serviceable, but obviously someone with ASD.

The first of those isn't a thing you could easily make a class for. I think it could be learned "on the fly" by an Aspie from a trusted parent or friend. But only if they truly understand what they're teaching and why.

The second: how can you teach something you never learned? Toddlers watch everyone around them like hawks, and copy a lot of body language, including smiles. It might be possible to identify such deficits and teach them, but I have no idea how to do it.

 

[Nervous Rex]

I would tell myself "You don't function like everyone else and you don't have to try to function like everyone else."

Once I accepted and processed my diagnosis, I realized that I really was different than everyone else and I started looking for what works for me. I've commented in several other posts that I feel like I'm a bulldozer trying to operate with a sports car's User's Manual. Finding what works for me, or "Writing my own User's Manual" has made a world of difference.

One example is sleep. My biggest personal failings have come from me being too tired and not dealing well with it. A lot of people I work with get by on 4 - 7 hours of sleep and then coffee in the mornings and I tried operating like them. But I can't function on less than 8 hours of sleep and caffeine does not help me function better (it just makes me feel less tired but doesn't help me focus). Lack of sleep weakens me mentally and emotionally. I break down / melt down easier when I'm tired and it makes me almost a completely different person. It may sound stupid to an NT or to those that work just fine on less sleep, but getting enough sleep has made a world of difference for me. I didn't find that out and make that change until I was almost 50. I wish I knew earlier.

 

[AO1501]

My question to you high functioning adults is what kind of things would you tell your younger self if you could? What resources or methods would you recommend to yourself?

Don't listen to others who may tell you what to think or believe in, however well meaning they may be. You are the one who has to live with the choices and decisions you make, and the values you live by. Nobody should have the power to guide you, and you should always take responsibility for yourself.

Forgive yourself the mistakes you make from foolishness, and learn from them, but work hard to fix the mistakes you make from ignorance. Accept that you will make both.

At this point we feel it might be most beneficial for him if he were to have a diagnosis and a better understanding of the condition. Then perhaps be introduced to methods/ tools he might find helpful in navigating adulthood. Thank you all for this community and for sharing.

You might ask yourself why a diagnosis might help - or in what ways you think it might - because it isn't always the case. He is, after all, the person he is regardless of whether he has a label for that or not. In my view, it's more important that he has the opportunity to discover himself and who he is, and an autism diagnosis may somewhat overwhelm that.

 

[TBRS1]

In addition to what has already been said, you, the caregiver, would be well served by learning the signs of both depression and anxiety so that these conditions can be more readily identified and dealt with BEFORE they cause the child problems.