I agree. There needs to be much more meaningful and differential diagnoses, but we are all largely stuck with 'just Autism' since the Aspergers diagnosis was abolished. There's often also something additional at play. I'll explain further when I talk about my sister.
I don't think any fighting among ourselves helps, but I can see why it's frustrating all round.
I can see both sides of the coin. I grew up with my sister, who we described to other people as being 'profoundly disabled' as it was the only way to get across how difficult her disability was. Her primary medical diagnosis was Downs syndrome, but we understand now that she also had Autism (among other things) She was non verbal, incontinent, blind, and couldn't walk. Her needs were so severe that she needed 24 hour care in the end. She had a social worker and a Psychiatrist allocated to her, but my needs were largely ignored. It was only when the social worker pointed out that I was going downhill that something was done to help me. I wasn't eating and had become malnourished. I had stopped speaking and engaging with people, I didn't want to go to school, I was bullied, and nobody understood or cared what was going on with me. I hid behind the sofa when visitors called. My sister was largely unaware of anything, such was the degree of her disability, but I suppose I had an 'awareness' that meant I was spiralling into a ball of anxiety, frustration and depression.
All medical diagnoses have a level of severity. Going back to my sisters Downs syndrome diagnosis, I see people with that condition on TV shows now. I see people with Downs syndrome who are able to do paid or voluntary work, I see them walking and talking. It made me very sad for my sisters level of disability. It made me frustrated that nobody understood how much it affected my sister and us as a family. It can make you feel aggrieved and angry. I would never deny another person's Downs syndrome diagnosis however, as that's not helpful to anyone and I think it just further deepens any resentment and anger. However much that may feel justified.
So I'm one of those who coped by masking. It exhausted me. It made me ill. And I only coped until I didn't. My needs were brushed off for most of my life. I've struggled with friendships, I can't have a relationship as I don't understand people's motives and I don't understand other people's language around day to day communication. I have locked myself away at times, I can't gobto social functions and I'm judged for that as people don't understand. I can't explain (or people don't want to know / hear / understand)
My daughter is also Autistic and has situational mutism. We call it that because selective mutism just sounds like she 'decides' when she fancies speaking. She can't go to Autistic groups as she can't cope with other kids. She has no friends. She's self harmed multiple times. Children and adults in this 'category' are more likely to take their own lives.
My struggles are mine, and my daughters are hers. It's so much more complex than just a black and white mild verus severe. I don't deny that having a profoundly disabled child in any way isn't absolutely life changing, frustrating and impossible at times. However, I don't think writing the likes of myself or my daughter off as the 'level 1's' is helpful. I'd love to see as much support for everyone as it's possible to get, as sure as hell we have all probably spent years fighting and it is exhausting.
We all deserve understsnding and empathy. I'd like to take this opportunity to acknoweldge that I hear what you are saying and i hope things improve from a diagnosis and support perspective. You deserve that, and so does your child.
For clarification around why a spectrum is not a line between mild and severe, I think this diagram is helpful and it's how Autism UK describe it. My own North East branch gave out these images and explained on detail how important it is to understand this.
Also, I'd like to put the self diagnosed cohort in a separate category. Self diagnosis of any condition does nobody any favours. I never described myself as being Autistic until I was officially diagnosed. I wouldn't do it with any other health condition either. Although I think it's fine to say 'I might have...' or 'I'm being investigated for...'