Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

Yes, you could have. Again, reasonable adjustments are based on needs not diagnosis. You not feeling able to, for whatever reasons, isn’t the same as legally being unable to.

'for whatever reasons' being the fact that I am autistic? Had no idea for a long long time and when you don't know what is 'wrong' you don't know how to fix it. It's all good and well sating what I could do legally but the reality is I had no understanding, no voice. My diagnosis gave me that.

It’s highly unlikely you didn’t have any difficulties and evidence otherwise how did you suspect you were autistic and how did you get a diagnosis? Because in order to be diagnosed one must have persistent difficulties that “limit and impair everyday functioning”.

I didn't know for many years those difficulties were autism, a lot of it was put down to my abuse and neglect in childhood. A lot of it was considered, by me, to be mental illness. I had no idea. Until my second child was going through the diagnostic process (very different to my first) and I saw something, mentioned it to DH and then we started investigating which led to diagnosis.

It's changed my life. None of which would have happened without it.

I’m not saying a diagnosis isn’t life changing, but it isn’t necessary to be covered by the Equality Act.

'for whatever reasons' being the fact that I am autistic?

For some yes, but there’s also other reasons people don’t feel able to advocate for themselves. It was a comment, not a criticism.

Had no idea for a long long time and when you don't know what is 'wrong' you don't know how to fix it. It's all good and well sating what I could do legally but the reality is I had no understanding, no voice. My diagnosis gave me that.

A diagnosis isn’t necessary for giving people a voice, having the information on the law and how to advocate for themselves/others can do that without a diagnosis.


I didn't know for many years those difficulties were autism, a lot of it was put down to my abuse and neglect in childhood. A lot of it was considered, by me, to be mental illness. I had no idea. Until my second child was going through the diagnostic process (very different to my first) and I saw something, mentioned it to DH and then we started investigating which led to diagnosis?

That’s my point, the impairments were there prior to diagnosis and therefore were covered by the Equality Act even though you didn’t have a diagnosis. Someone without any difficulties wouldn’t have suspected autism, pursued an assessment and wouldn’t get a diagnosis. Mental illness can be a disability anyway.

Is there a way to get accommodations at work with an overseas childhood diagnosis you have no record of and when you have never received support of any kind?

But how do you prove a need due to disability rather than a preference for, say, flexible working or a permanent desk rather than hot desking?

Typical of what? I'm not experiencing any of the situations described in many of the posts but I don't have to validate them all for the information to be important to the person who wrote them. I have also explained that we have other personal circumstances that make our situation harder to manage. Often a diagnosis is exactly the right thing. Sometimes it isn't. To some people anyway.

DD is very similar, she initially was uncomfortable talking about her diagnosis now she has become more comfortable with it as she gets older, even telling me about the other autistic girl in her class. It also really helps her with the more social complexity of early teens to know she might find things harder or misunderstand.

Yes, if you can prove the impairment in other ways e.g. via occupational health or did you mention it when you registered with a GP in the UK? It’s difficult to say exactly what evidence without knowing the exact situation and you/your history. Do you know who assessed you? If so, you could see if they still hold the records.

My child wouldn't be in the right educational provision now if it weren't for diagnosis. It was an admissions requirement. Otherwise they would have been forced into a PRU which is wholly unsuited to their needs.

Sickoffamilydrama
thanks. I just don’t think she would like being singled out in her class. She already goes to a little class at school for social confidence and hates that. She’s very good at reading and spelling. It’s definitely the social skills she hasn’t got. There is another girl in her class who has autism. I just need to get things moving before she starts the local high school. I want to speak to her teacher about my concerns. Or maybe she’s just really shy. Obviously I can’t say she has autism without being diagnosed but I’d say I was 70% sure.

My DS12 is due to be assessed next month. I strongly suspect his Dad is autistic. When I explained to my DS what was happening and explained ASD/Asperger’s to him I could see the relief in his face, I could literally see the stress leaving his body. Like he finally could find some validation and reason for the way he thinks and feels and it has had nothing but a positive affect on him since, he has embraced it! I think he’ll read the riot act to the psychologist if she says he doesn’t have ASD 😂

He is so like his Dad, my ex, who is undiagnosed and I suspect will remain that way no matter what comes from my DS being assessed. If we had known my ex had ASD we could have gotten help to work together as a couple, so I could understand what he needed in a relationship and he could understand my needs. Unfortunately we were like two aliens to each other. I spent most of our marriage lost at sea, not understanding why he acted the way he did and why he said the things he did. It makes me so sad to know that I could have spent my life with the man who will always be the love of my life but as I’d no idea and thought he just didn’t care or love me, I eventually ended it.

I feel that if my DS does get a diagnosis and eventually goes on to meet someone who is NT they could work together and understand the needs of each other and learn to live harmoniously, something I wish I had been given in my marriage, had I known. This in itself is why it’s so important for my DS to be assessed. It’s for his future.

I have a patient at work who has moderate to severe ASD who wasn't diagnosed until he was nearly 15! When he first came to see us I was shocked he hadn't been diagnosed already as it was very obvious he was autistic. Parents struggled to get him to school most days or leave the house in general. He had no access to help or was able to attend a special school. Personally I would be pushing for a diagnosis sooner rather than later, I think your child would thank you for it in the future. It also is a long road to get to diagnois, my child is 7 and has had issues since nursery and we are still waiting for our first appointment! Good luck x

I think it is a mistake. I have

I can understand why you wouldn't want to diagnose or 'label' your child as it can create certain negative perceptions and may hinder opportunities. However, there is a flip side. As others have said, it can also hinder people from getting support they need, and sometimes the diagnosis is needed.

I have close family members in their 60s who I suspect may on the spectrum, they have most traits and can't look after themselves. Their behaviour is off the wall, and they clearly emotionally struggle a lot. This is what happens when autism traits go unchecked and diagnosed. It is also why I got my daughter assessed, and I have no regrets.

Have two with asd both diagnosed. My partner is not diagnosed and it has had a massive impact on him. As a teacher I see many undiagnosed kids. I think it is very sad to see these kids struggle through school. The diagnosis could allow them a smoother path through the system.

I have literally nothing except the diagnosis as far as I remember. I have never mentioned it to any GP. I don't know who assessed me. Apparently the records would only have to be kept until my 25th birthday in the country I was diagnosed.

That’s my point, the impairments were there prior to diagnosis and therefore were covered by the Equality Act even though you didn’t have a diagnosis.

I keep coming back to this but not quite knowing what to say. I'm not sure why you are unwilling to accept my viewpoint which has been my real life experience.

Someone without any difficulties wouldn’t have suspected autism, pursued an assessment and wouldn’t get a diagnosis. Mental illness can be a disability anyway.

I didn't though, for about 40 years. Back in the 90s when I was running out of school nobody helped, I was punished. When I got my first job and needed help it wasn't there. I don't suspect autism, I thought I was fucking weird. Not ok. Abnormal. I struggled through my life because I did not know.

The law may have been on my side but realistically if I had walked into work and said X is difficult, can you arrange Y, the first thing they would have looked for would be a reason, and I did not have that.

Knowing who you are is one of the most important things a person could ever have.

There are some great Neurodiversity speakers these days, Google Ellie Middleton - Maybe hearing young women like her speak will help your daughter in time. Lots on instagram too

I am autistic. I wasn’t diagnosed as a child. I was, however, ‘labelled’ as weird, odd, crazy, strange, stuck up, boring, etc etc. It took me years to shake the trauma of the bullying and exclusion I endured.

As a happily autistic adult, I bloody LOVE my autistic label. It’s me! It’s validation that i’m not any of the above things; i’m just different and that’s ok.

I keep coming back to this but not quite knowing what to say. I'm not sure why you are unwilling to accept my viewpoint which has been my real life experience.

Because you seem to be insisting that you needed a diagnosis in order to be covered under the Equality Act, which isn’t correct. You acknowledge you had difficulties, you just didn’t know they were attributed to autism, therefore those impairments would have been covered by the Equality Act (or it’s predecessor depending on the year) before you were diagnosed. That is fact, not related to your “viewpoint”.

I didn't though, for about 40 years. Back in the 90s when I was running out of school nobody helped, I was punished. When I got my first job and needed help it wasn't there. I don't suspect autism, I thought I was fucking weird. Not ok. Abnormal. I struggled through my life because I did not know.

You are misunderstanding. I didn’t say you had to suspect autism from childhood. I said if you didn’t have any difficulties you wouldn’t have suspected autism or pursued an assessment and diagnosis.

You posted you had/have difficulties and you must have suspected autism at some point otherwise why would you pursue an assessment and diagnosis. As the criteria for diagnosis is difficulties that “limit and impair everyday functioning”. Why would anyone without any difficulties think they may be autistic as they wouldn’t meet the criteria.

The law may have been on my side but realistically if I had walked into work and said X is difficult, can you arrange Y, the first thing they would have looked for would be a reason, and I did not have that.

You did have a reason. The reason doesn’t need to have a diagnosis. The impairments themselves are reason enough.


Knowing who you are is one of the most important things a person could ever have.

Please quote where I have posted otherwise?

@ParrotPoppy

I feel as if I am being talked over repeatedly, my experience invalidated, and that ended with my diagnosis, so I'm going to step away.

I am not taking over you or invalidating you. This is a discussion forum and I am pointing out a diagnosis isn’t necessary to be covered by the Equality Act.

That sounds very positive.

As an autistic woman diagnosed two years ago, I think not getting a diagnosis for your child is basically ableism.
Knowing who you are and why enables you to get support and make the right choices. Why would you deny your child that? I think it's abusive discrimination, frankly.

I feel like women diagnosed as adults who wish they were diagnosed as a child don't understand the reality of a 90s diagnosis. I was offered no support. I knew of no female autistic role models.

I feel like women diagnosed as adults who wish they were diagnosed as a child don't understand the reality of a 90s diagnosis. I was offered no support. I knew of no female autistic role models.

I totally get that. It reframed my life experiences and made me understand my vulnerability. When I say I wish I had known, I suppose I mean I wish I had known with the added benefit of all the knowledge that we have now.