Should I continue with the formal autistic identification process?

I also waited more than two years, not to mention the several years it took to book the first doctor appointment.  Got my diagnosis about a month ago.  It's been a huge journey.

Some of things it means to me:

1) It gives me more authority to act as an autistic advocate.  It may not matter among out community, but it gives me more leverage at work to say "this child needs this kind of support because I recognise this behaviour and it means this..."

2) I can be included in acadenic research projects that will benefit other autistic people who come after me.  I've already volunteered for one such project and am considering a second.

3) I can have something in my medical records.  Usually I manage life fairly well at my own pace, but there are a couple of times when I've been in hospital and become overwhelmed and non-verbal or slow to process information.  As I get older and may find myself in that position more often, I hope that having my needs in my medical notes may help facilitate things.

4) It was tough jumping through the hoops to get there, but now I can say to other autistic people going through the same thing that I've been there and it was worth it.  Partly for my own peace of mind and partly so that others will take my claims more seriously. There's a kind of kinship in having lived through those experiences and attitudes.

5) I am not a huge fan of my diagnostic report, but I have made the choice that I will not let it define me.  These are someone else's observations which give me a helpful understanding of what ithers might see in me, but they are not who I am.  I am still in charge of my own identity.

6) It's given me the confidence to ask for a few minor accommodations at work.  It's not much- the big one was being allowed to text instead of phone in when I'm ill, but I'm also trying to campaign to get the dress code altered.  I have pink hair which I have to keep covered to conform with their sense of "normalcy" but I am arguing that this is discrimination as my hair colour is a support strategy that I use to deal with being autistic.

So in summary, it's about more than just me, it's about how having that label enables me to achieve more for my community.  Hopefully. ;)

Thanks for your reply, some very useful points here that I hadn’t thought of.

Glitter said:

So in summary, it's about more than just me, it's about how having that label enables me to achieve more for my community.  Hopefully. ;)

Love this, absolutely! I admire your sense of commitment and responsibility for our community, I would love to be an autistic advocate too!

Glitter said:

These are someone else's observations which give me a helpful understanding of what ithers might see in me, but they are not who I am.  I am still in charge of my own identity.

Very helpful, a piece of paper is not comparable to lived autistic experience. You are the expert on your own autistic experience.

Glitter said:

I can have something in my medical records.  Usually I manage life fairly well at my own pace, but there are a couple of times when I've been in hospital and become overwhelmed and non-verbal or slow to process information.  As I get older and may find myself in that position more often, I hope that having my needs in my medical notes may help facilitate things.

A formal identification is proof of your autistic needs if you can’t articulate them?

Glitter said:

I can be included in acadenic research projects that will benefit other autistic people who come after me.  I've already volunteered for one such project and am considering a second.

What projects are you considering?

Thanks for your reply, some very useful points here that I hadn’t thought of.

Glitter said:

So in summary, it's about more than just me, it's about how having that label enables me to achieve more for my community.  Hopefully. ;)

Love this, absolutely! I admire your sense of commitment and responsibility for our community, I would love to be an autistic advocate too!

Glitter said:

These are someone else's observations which give me a helpful understanding of what ithers might see in me, but they are not who I am.  I am still in charge of my own identity.

Very helpful, a piece of paper is not comparable to lived autistic experience. You are the expert on your own autistic experience.

Glitter said:

I can have something in my medical records.  Usually I manage life fairly well at my own pace, but there are a couple of times when I've been in hospital and become overwhelmed and non-verbal or slow to process information.  As I get older and may find myself in that position more often, I hope that having my needs in my medical notes may help facilitate things.

A formal identification is proof of your autistic needs if you can’t articulate them?

Glitter said:

I can be included in acadenic research projects that will benefit other autistic people who come after me.  I've already volunteered for one such project and am considering a second.

What projects are you considering?

One is an interview about autistic pregnancy and birth experiences which I'm signed up for already.  The other is looking at the effect of a particular medication on autistic people and whether it helps with anxiety.  This needs more consideration as there may be side effects that impact on my family, but it does sound like a good area of investigation that could help people in their lives.

Having had moments of being on hospital and getting overwhelmed and not being able to articulate what happened, I think if the doctors or nurses could see that I was autistic then they might try a different approach. I think there's also a summary sheet that has your allergies and stuff on for quick reference so I'm making enquiries about getting a simple note in there, something like give me a calm apace and time to process.