Refusal to accept autism

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.

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.