Refusal to accept autism

Thanks DaveAsperg,

What a fab link. This is an eye opener for him. 

Much appreciated.

Loads of actors and film producers are autistic 

www.appliedbehavioranalysisprograms.com/.../

Hi Bassface, 

Thanks for the input. We do show him positive examples of celebrities or well known people in their fields who are autistic. He wants to be an actor so we mainly use examples of autistic actors/presenters/singers, like daryl hannah, chris packham, Anne heggarty and gary newman so he can see the success that can also be achieved. We were unaware that Guy Martin has aspergers, he will be a brilliant addition to show our son. 

We will definately check out the YouTube channel too. Thanks. 

I would show him examples of successful autistic people so he knows that being autistic doesn't mean he has to fit into one stereotype.

There are a lot of negative connotations with being autistic, but there are plenty of artists, TV presenters, musicians, scientists, athletes, comedians you name it who are on the autistic spectrum and they are people that the general public admire. Guy Martin has Asperger's and people think he's quite cool. It's said that Andy Warhol probably had Asperger's. There is a good Youtube Channel 'Aspergers from the Inside' and the presenter is very eloquent so you wouldn't know he had Asperger's.

Guy Martin: https://www.driving.co.uk/news/features/guy-martin-racing-formula-ones-jenson-button-aspergers-theres-life-bikes/

Most welcome. It's nice to hear he has so much support. I feel sorry for younger people now, it was hard enough when I was in my teens; I expect is a nightmare now. 

All the best

Hi Shadow,

We are really careful with his online presence and he only communicates with the same group he has been communicating with for years and whom he is comfortable with. 

He does however, spend way too much time looking at the way some people in the USA treat people with autism and they are never stories with happy outcomes or any positivity. He then uses this information to tell us that this is how all autistic people are seen and if he tries to go about his life the same sorts of things will happen to him too.

We have, of course, tried to tell him all the positive things that we have read about also to give some balance so that he can see that there are positives as well as negatives but he chooses to only see the negativity at the moment. 

We are not blind to the fact that living with autism is not an easy thing for anyone to deal with and there are aspects of the day that can be unbearable but we are desperately trying to help him to understand that there may be ways of coping with things to make stuff a little easier to bear. 

We are by no means experts and we are muddling through it all together. We just want him to be happy and healthy and it's been a tough year for everyone with a global pandemic thrown in the mix. Anything suggestions that anyone has to help him cope would be gratefully received. 

Is your son engaging with any friend groups or online communities that might be cause for concern? A lot of groups for gaming, forums etc online are very hostile to autistic individuals from my personal experience. It might be that people have been saying unkind or untrue things that have had an impact on the way he feels about himself.

Hi NAS66574,

This has been incredibly insightful and helpful so firstly thank you for taking the time to reply. 

My son has always accepted the diagnosis before, it is very recently that this denial and want for a second opinion has occured. It is useful to know that a second opinion might help him either in acceptance or new diagnosis. 

He has a lot of support both at home and in college. His counselling, which he has recently started, has afforded him the opportunity to say things which, he can openly say at home and is encouraged to be as open as possible, but he worries they might upset me. I can become tearful and this sometimes makes him think that he should bottle things up rather than share and upset me, but as I have tried to explain, I get upset because it hurts as a parent to hear your child talk about wanting to hurt themselves or not be in the world anymore. I am glad he can tell me these things so that we can talk things through and get him the help he needs but I understand the help in speaking to a trained professional too. 

We have, in the last few days, found a trigger which had been causing his behaviour to worsen and removed that trigger so he is slightly calmer. Your advice will be acted upon though. I am extremely grateful for the insight. 

Thanks

Hi NAS70074,

I understand that element of refusal. For most of my life (up to my mid-thirties) I was aware of, let's say challenges, I seemed to face on an almost daily basis. For years I would think to myself that it cannot be 'normal', and 'why do I struggle so much?' 

Firstly context, from age 17 family support was largely absent for me. I was on my own and dealing with severe psychological, trauma, and subsense misuse issues. I had to work to survive, and had no choice but to try and take part in 'normal' life.

I had several refusals around my condition, the first was to refuse to be a victim. I never let my difficulties stop me from trying to better myself as a person, or further my (very much haphazard) career, I would push myself through uncomfortable and challenging situations. Life, however, remained a real challenge, work and romantic relationships in particular.

As I turned 30, still not understanding why I found daily life to be so challenging, draining, overwhelming, still suffering regular bouts of significant depression, I sought an assessment and received a clinical diagnosis of ASD. 

The first couple of years I largely ignored it. I couldn't really handle it and wasn't sure what to do with it. This was the second refusal. Although it answered questions, it did not help me. In fact, I still wanted to find a way for it to not be true, a third refusal. I wanted it to be linked to developmental issues. 

To accept it was surprisingly difficult for me, despite knowing for a long time that it was there -- even before diagnosis.

Finally accepting it has helped me greatly. I can understand myself better. I no longer try to fight it like I used to. It helped me develop coping strategies. It allows me to communicate better with my wife and helps her to understand why I do not express myself in ways she might expect of 'normal' people. It helps both of us to understand why my mood can turn so abruptly. It helps her to understand why my communication can be confusing, and why I struggle to explain my feelings, and why I sometimes make very strange decisions. 

It helps me to understand why I get so stressed, and so tired.

Accepting it has helped me to manage the challenges. 

I also have weekly therapy to work on the psychological issues, although this only started this year -- I spent a lot of time seeking a very experienced therapist with knowledge of ASD who could help to separate ASD from trauma and developmental issues.

My point is that accepting it is incredibly valuable. 

In regards to your specific situation. Your son is 18. By his age I was drug dependent and self-harming, a school dropout and working full-time. I had no support. 

If your son, as a young adult, wants a second opinion, I would say that you work with him and try to help get this second opinion. A reassessment, if possible, might not hurt. If, for what ever reason, he was misdiagnosed as a child, then it would be important to identify that.

If he is, then it might help him to accept it himself.

ASD doesn't need to be a barrier; it is merely a hurdle -- albeit a series of closely-placed, hourly hurdles at times.

Things that helped me survive my experience:

Music - I love music and started playing bass guitar at age 16 forming a band with my best friend and his brothers. It helped my self confidence, and helped me to meet people and put me in social situations where I was able to succeed; having a topic to talk about with others.

Martial arts - In my mid-twenties, I started practising Taekwon-Do. Again, helped my self-confidence hugely and gave me another important social network. 

Psychology - Familiarising myself with general knowledge of psychology allowed me to understand other people's behaviour and to analyse/recognise their emotions. It can still be difficult to respond in a 'natural' way, but it helps greatly to recognise when someone is bored or agitated for example. 

Writing - writing was my therapy for many years.

Apologies for the essay -- I hope it is not too off-topic.

The points I am trying to make are as follows:

-- Acceptance is very useful. Denial will only ever cause difficulty.

-- If your son wants a second assessment now that he is an adult, support him with it. Have a conversation to understand why; if he genuinely believes he does not have ASD, what are his reasons? I would be important to understand it fully to support the process of getting an assessment anyway, so, as I say, explore his desire for a second assessment. I like to think you will either find a reason to justify his desire, or help him to clarify and accept in his own mind that he does in fact suffer ASD. 

-- ASD is not "game over", one just has to know how to work with it. I suspect people with high-functioning autism have a tendency to 'fight themselves'. I know I do. But I try to manage time spent socially, or time spend in overly-stimulating situations. I try to keep myself properly fed, watered and rested, though I will always struggle.

All the best with it.

Thanks Blue and thanks Nick. My son has similar feelings to you Blue by the sounds of it. He has recently noticed that his friends have girlfriends and he feels like he should have one too. This has consumed his thoughts and he feels like he will never achieve a meaningful relationship which makes him hate himself. He reads a lot of online stuff about hatred towards autistic people, especially in America and this also troubles him and makes him hate his diagnosis. He is scared of the outside world and I understand that but his main view of it is through the hatred people spew online where they can say hateful things and sit back amongst their anonymity and enjoy the pain and hurt they have caused. He has some friends online and he has a number of autistic friends who are also high functioning but as my son is being so negative at present they have withdrawn from him and this is making my son spiral. He is stuck in a cycle of negativity and I am looking for ways to help him out of it. 

I am so sorry that you have experienced such discrimination. I really think that better education in schools and workplaces regarding autism is what is needed. It is the only way myths and prejudices can be broken down. 

A couple of years ago on my journey of self-discovery, I was inspired by adult with Aspergers who was delivering a course I was doing. She made no apology for her traits and happily discussed them in a factual way and how she manages her symptoms in her day to day life. She's an inspiration to me and  lives a very fulfilled life and I found myself looking up to her. 

All that to say I think connecting with other autistic people has done wonders for my wellbeing, and acceptance of myself. Does he have much experience of other high functioning autistic people?

Your son is clever and that is worse than being stupid, He has recognised that himself having autism is going to make thing harder a lot more harder. He has already started noticing that he is starting to fall behind the rest of his age group emotionally and mentally which you can't probably understand and it's frustrating enough. Know i have pointed it out to you are going to recognise it more and more often. 

From experience when you hit that age making friends become impossible challenge, most of your friends from school and college fall out of touch or leave you because they seem to emotionally develop a lot faster and go on to do stuff. The most noticeable thing i started to recognise when i hit that age was people my own age group obtaining their driving licences, Moving out of their parents home, Travelling and starting amazing job opportunities while i was struggling to find work and figure out what i wanted to do and what i could do.

It's hard not to compare yourself to those you went to school with, It even harder when other people start comparing you with others of your same age group. from experience when you have autism and the right support just isn't their or you come from a bad family environment those challenges and age appropriate milestones become harder to achieve.

Sometimes you feel shame and because your autistic it takes you a lot longer to recognise your own emotions. That shame is from feeling that you let the people around you down, That you are going to be a constant burden on family members and that in order to achieve certain milestones in this day age you going to have to ask to be financially supported and if your family help you with the cost of driving lesson and you fail the pressure is unbearable. Be prepared for their mental health to start deteriorate and it also important to not put pressure on your son and let him develop at his own speed.      

You as the autistic individuals start questioning how you are ever going to be able to be independent and worry about how financially your going to be able to manage and afford to catch up to the rest of your age group. I am twenty four years old and i still haven't managed to obtain my driving licence, Move out of my childhood home and maintain a job for longer than six months and their have been many attempts and fails and i come from a very backwards thing and abusive family background.

When i first figured out i was autistic at eighteen i was angry, I didn't get diagnosed until i was twenty two. I have experienced workplace bullying, discrimination and physical assaults and harmed as a result of my autism and possible ADHD which i wish was not common with autistic individuals. I couldn't explain to people in a way they could understand and when i said autism or aspergers they took on look and stated i don't look autistic and people dismissed it or deliberately set me up to fail.

I have noticed a lot recently that people treat you awful when they find out you have autism and it usually when  people are alone with you, i have even noticed my CV being binned straight after the interview because i had mentioned i have autism, I have had a spiteful therapist and counsellor who shamed me during session and compared me to people they know with autism and managing or to online autism ambassadors and somedays i wish their was a cure but there is not.          

i 'm watchng this space