How common is ASD

[glowyjuice]

Hi I'm posting this as just to see what other peoples opinions are, I've read that about 1% of people have a diagnosis of ASD, I'm wondering do you think taking into account those who are undiagnosed would this figure be much higher? I do sometimes wonder how many undiagnosed adults or even children there are out there.

I've always thought this explanation of the spectrum described more peoples' experiences than most do.
neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

As for classifying one person's autism as compared to another person's autism in terms of their abilities, I wouldn't know where to start. I don't even know if that's a good thing to do in terms of describing how it affects different people.

All I have is my own experience of my now adult DD and my observations of her challenges which can vary a lot day-to-day. Sometimes I could not definitively say a reaction of hers was definitely due to her autism, because it could also be attributable to one of the co-morbids. Much of the time her CFS limits her achievements far more than her autism.

ObviousNameChage - I hope you're okay.

When mine were dx'ed as preschoolers 15+ years ago, we felt very much alone. I only knew of one other parent with a child with an ASD diagnosis. Online websites like MN were the main way of finding useful information and other parents in my situation.

As my DC got older and progressed through primary and secondary school, they each had classmates who they'd known since early primary who later went on to be diagnosed with ASD. So anyone looking at the rate of diagnosis in their class in the mid-2000s would have said it was 1 in 30. If they'd checked those same children 10 years later they would have seen that it was actually 3 or 4 in 30 - and that still doesn't take into account the ones who might not get a diagnosis until much later in life.

In the primary school where I work, most classes now have at least one child with an ASD diagnosis. I also see other children who have definite traits which become increasingly obvious as they get older.

In the general population I would say that there are a lot of undiagnosed people out there. As others have mentioned, a lot of parents realise during their own child's assessments that they themselves (and other older family members) almost certainly would meet the diagnostic criteria too.

Just replying to those that think the incidence of asd on mumsnet is quite high -
It should be remembered that the number of people (indirectly) affected by autism is quite a bit higher than the number of people who have autism. Many teachers here have mentioned that, in their experience, there is at least 1 child with asd per class. So in a small school of 90 pupils (about 45 families, say) there would be about 3-4 with autism. So maybe about 1 in 15 families who are dealing with asd on a daily basis? (I haven't checked actual figures, just illustrating a point here.) I'm not including grandparents, cousins, friends etc. Many of those who post don't have asd themselves but are affected by it nonetheless. The incidence of this group of people is always going to be higher.
And also yes, to those who say you are more likely to post if looking for help and support, or to reply if you have experience that may be helpful.

Before my son was diagnosed I would have said 1%. Now I think its much higher and also many people undiagnosed.

@SwimmyG

Carly Fleischmann is non-verbal but has a much better understanding of pragmatic language and social awareness than I do. In this interview with Channing Tatum she is flirting, joking, is able to take turns etc etc. I struggle with those things a lot.

Being non-verbal doesn’t always mean you’ll never do anything with your life and being verbal doesn’t always mean the world is all rainbows and sparkles and you can do anything. Yes, in some cases the person is significantly affected in all areas of the spectrum and will need level 3 support for everything. In other cases they may only need level 1 support in some areas but level 2 in others.

I have been assessed as needing level 1 support so would be labelled “high functioning“, which is fine but also irritating because then I’m labelled as not being ‘that bad’, just a ‘bit quirky‘, only have it ‘mildly’, which is not the case at all. I’m not going to detail my issues/struggles here as I don’t believe there’s much point and it would turn into a race to the bottom with some people.

I can’t understand what it’s like to be Carly or someone else who is significantly affected in all areas but I wish people wouldn’t presume they understand what it’s like to be me either and that I can’t possibly have it as bad just because I can talk. Advocating for someone doesn’t have to be at the expense of others, which is sometimes how it seems on here.

I don’t like the linear or gradient spectrum that people refer to because it pigeon holes everybody on the spectrum into one box that they’re not allowed to get out of. It’s not a gradient at all. It’s not less autistic to most autistic. It’s not mild to severe. Carly is no more disabled than I am and vice versa but people would presume very different things about us.

I am also another professionally diagnosed person that is irritated by the whole self-identification/self diagnosis nonsense. You cannot call yourself autistic unless you have a formal diagnosis. It’s akin to going around telling people you have cancer when you don’t. It’s a lie.

I watched the videos of Carly, I was amazed but I also watched the interviews around it. The majority of her AAC use was pre programmed so it is a wholey true representation of her abilities. She is amazing, but I am talking about functioning communication by any means not just verbal.

I completely support the use of AAC and think it should be used more widely but I cannot agree that someone who is able to articulate as well as you do is just as disabled as someone who can only very limited communicate whether that's by objects of ref, pecs, other symbol systems, makaton etc by nature of you being on here being able to type and Express your feelings you are already a more able communicator than someone with severe autism.

I'm completely with you on self I D. An autism dx isn't something you can opt into. I imagine for those who geta dx as an adult it's an extremely emotional and bearing experience.

I cannot agree that autism is autism, I'm not saying that those who don't have severe autism don't need support or a form of dx, I'd just like it to revert back to how the dx was originally given or for those with severe needs to be separated in some way.

@ObviousNameChange I mistook your intentions. Please don't leave the discussion.

These discussions make me very defensive as due to the nature of my sons disability and those like him they cannot advocate for themselves but there are many people who can advocate for those with autism that isn't as profound so it always feels a battle.