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.

@Justrealised

My son had his dx at two years old. I've noticed that since AS has been included in the autism dx and terms like Neurodiverse have been used the Autism diagnosis has lost it's meaning. I'd like to see the diagnosis split again so those with more profound needs have a dx which communicates their difficulties accurately. Autism now seems to mean a few quirks or a difference to be celebrated rather than the disability it is.

Yes, I think more people are being diagnosed with Autism partially because those who are less impaired are now given the diagnosis where as previously Autism dx was given to the more profound. Just to be clear I'm not saying a dx isn't helpful to those not profound or they shouldn't be dx but that the dx for those more severely affected should be separate so that it's meaning is clear.

100% Agree with this.

@Popsicle438

*Message deleted by MNHQ. Here's a link to our Talk guidelines.

I'm guessing you don't have an autistic child?

Thank you @BlankTimes

@Popsicle438

*Message deleted by MNHQ. Here's a link to our Talk guidelines.

Fuck me, I hope that teachers have better training and insight these days.

How unimaginably stupid and devoid of empathy do you have to be to write something like that?

It's well known that people mask and mask and mask and mask until bam, safety and it all unravels.

Unbelievable,

@Elephantsparade

As a parent of a child with ASD, I was told 1 in 52 but with missing girls i think its 1 in 30. As for why we are on mumsnet in high proportions. I find a lot of parents like me get quite cut off and isolated as our childs SEN takes up a lot of time and limits chances to go out so its fills a gap. I also spend a lot of time in my car waiting whilst appointments happen or my child attends their school on part time hours and its something to do.

I think this is why we are on MN in high proportions also. I first came to MN when my DC1 was diagnosed. I was goolging support services for families and came across some threads. Stayed for the rest of MN.

I agree also that parents with SEN kids are often quite isolated. I freely admit that probbaly 90% of my social interaction with other adults is on MN.

You'd think a supposed teacher would know better.

[quote BlankTimes]assessment would be really hard to access

It really isn't.

Do the AQ test online, aspergerstest.net/aq-test/ take the results to your GP if you score within the parameters for the possibility of ASD, ask for a referral. Your GP will explain how long the NHS waiting lists in your area are, be prepared for a good 2 years. He will also be able to give you a referral for a private assessment, or look for a diagnostic service in your area via the NAS www.autism.org.uk/directory[/quote]

My GP wouldn't refer me as my health board doesn't have any provision for adult assessment.

It's not 'common'. It's exclusive. We have it. If you don't have it, you can't join.

@Popsicle438, that's called 'masking'. We do it all day so people like you can feel comfortable. Then, when we go home, we're mentally, emotionally and physically exhausted, so we might rant, scream, throw things, kick, become mute, bite our arms, hide in bed or take to a book or computer game to dull the pain. That's what adapting to a neurotypical world does to us.

edited by MNHQ at OP's request - repeats deleted post
It is incredibly well known and well documented that ASD children can abide by the rules when at school (which takes up all their mental energy) and then collapse at home. Because home is their safe space.

I find it shocking that someone who claims to be a teacher can be so ignorant of something that is fundamentally understood.

(Mind you, talking of ignorant teachers, when my DS was diagnosed and the ed psych was talking to us and his form teacher she commented brightly 'Oh, there is a boy in the news today who is atusti!!' (That boy in question was in the news because he had muredered a school friend. I froze. The ed psych froze and DH just looked confused. I find it almost funny now. )

@Nowmum43 everyone is different but generic things that have helped me massively are:

changing my clothes to natural fabrics and loose shapes (bamboo, linen and cotton). This was perhaps the most £££ thing and made easier by not being a teenager / swayed by fashion any more. Bamboo socks are pretty reasonable though and don't have the hard seams that other socks have.

Noise cancelling headphones

Taking loads of quiet time, and by loads sometimes I just sit quietly in a corner for two days until I feel better. I prioritise my job above my home life, so in practice I spend a lot of time being quiet at home. As she gets older you may need to teach her coping skills for independent living - I struggled to feed myself properly and keep a house (I hated being in a houseshare). So having simple healthy meals in, or minimal prep recipes and I also have a cleaner (which is affordable because I prioritise my job over home life).

Advance notice of as much stuff as possible, including plan changes. I look up menus, Google street view, find out who will be at places, etc. The other day DH decided to stay at his sister's for takeaway at the last minute and although I was polite when he called to tell me, I had a full scale mardy meltdown. I don't care, objectively, if he stays for takeaway- we didn't have anything planned- but the last minute change really freaked me out. It took me six hours to calm down and it was really hard to convince him that I wasn't cross with him. It was also really hard to lie to him on the phone - like picking up a weight I could barely lift. I knew if I told him how I really felt he'd come straight home but that's not fair on him - my ASD shouldn't rule his life.

The way I see it is that you can't get rid of everything, so it's about smoothing the stuff you can control so that the other stuff has less of an impact (hopefully).

@Popsicle438 this attitude is what makes it so hard for children to be diagnosed.

My DD (13 yo) was diagnosed last week by NHS paediatrics after a 4-year merry go round which caused enormous stress to her and our whole family. I first sought help in 2015 but due to always seeing locums (including one who said she couldn't be on the spectrum as she has no speech disorder), no one ever put all the information together.

The relief she has at finally receiving a diagnosis is immense. I pursued it as she is so like my mum it's untrue, and I think mum would have had a far happier life with similar insight.

I should point out that it has taken this long with 2 fully supportive schools, a supportive GP and our being able to fund private reports and support. Hate to think how we'd have managed otherwise.

@Popsicle438 please educate yourself. I’m a teacher. My knowledge of autism was negligible before I became a parent of an autistic child. What you are saying is incorrect, insensitive and if you are still teaching you need to better understand autism.

@RocketPanda

In what way is the diagnostic male-based? Have you links to studies? Not arguing, would genuinely be interested.

@Justrealised I completely agree - to me they are two very different kettles of fish and our needs are so different.

@OffCycling did they at least start referral to paediatrics?

[quote StupidNC]@Nowmum43 everyone is different but generic things that have helped me massively are:

changing my clothes to natural fabrics and loose shapes (bamboo, linen and cotton). This was perhaps the most £££ thing and made easier by not being a teenager / swayed by fashion any more. Bamboo socks are pretty reasonable though and don't have the hard seams that other socks have.

Noise cancelling headphones

Taking loads of quiet time, and by loads sometimes I just sit quietly in a corner for two days until I feel better. I prioritise my job above my home life, so in practice I spend a lot of time being quiet at home. As she gets older you may need to teach her coping skills for independent living - I struggled to feed myself properly and keep a house (I hated being in a houseshare). So having simple healthy meals in, or minimal prep recipes and I also have a cleaner (which is affordable because I prioritise my job over home life).

Advance notice of as much stuff as possible, including plan changes. I look up menus, Google street view, find out who will be at places, etc. The other day DH decided to stay at his sister's for takeaway at the last minute and although I was polite when he called to tell me, I had a full scale mardy meltdown. I don't care, objectively, if he stays for takeaway- we didn't have anything planned- but the last minute change really freaked me out. It took me six hours to calm down and it was really hard to convince him that I wasn't cross with him. It was also really hard to lie to him on the phone - like picking up a weight I could barely lift. I knew if I told him how I really felt he'd come straight home but that's not fair on him - my ASD shouldn't rule his life.

The way I see it is that you can't get rid of everything, so it's about smoothing the stuff you can control so that the other stuff has less of an impact (hopefully).[/quote]
Thank you so much.
At the moment we encourage quiet time if we have been out, she doesn't always want it but we get her do it it as we know it will later on in the evening her being unable to cope and she'll start hitting out at the smallest thing.
She loves to bake and I'll get her to cook more now she's starting high school. She's most looking forward to home economics which is good and will hopefully help her look after herself as she's get older.
She struggles in the car so we have got a holder so she can watch her iPad with her headphones on, not sure if that's a good idea or not.
She is also doing hypnosis to try and help her with some of her anxieties like needing the toilet when she's anxious and getting worked up in the car.
I just want her to be happy and she seems so anxious all the time that it's heartbreaking. I think the worry or starting high school isn't helping her either.

@Justrealised

The problem with that option is that a diagnosis at an early age doesn't necessarily tell you everything. DS2 was much, much more disabled by his autism at 3 than he is now at 30. Autistic people still grow up and develop and take advantage of education.

My son was diagnosed aged nine after years of seeking help, we were told he was spirited by the health visitor and school saw that he coped academically so didn’t pursue anything. It is so hard to get a dx so anyone who has one will have had to endure many hoops
I also feel I may be asd too but am too long in the tooth to bother, I have researched it in depth and match many of the traits. I think amongst my age group there will be many undiagnosed people ou there. Is there any point getting one later in life ?

[quote toconclude]@RocketPanda

In what way is the diagnostic male-based? Have you links to studies? Not arguing, would genuinely be interested.[/quote]
The diagnosis assessment is based on how autism presents in males. It is widely acknowledged and recognised now that autism presents significantly differently in females, but still the same questions/assessment are used. That's if it even gets noticed and recommended for referrals, because once again , the typical red flags are male presentation based.

As for the "oh could it be autism" reflex response in adult threads , a lot of the time it comes from posters thinking they are being inclusive and considerate, that don't actually have any understanding or experience of autism. Hence always correlating bad behaviour with autism. It's misguided at best and harmful at worst.

@toconclude it doesn't tell you everything but it does tell you that the child was so affected that their autism was apparent from an early age where as in some people it can be questionable or not apparent for a long time. Yes education and therapies help but the base line is different. I'm pleased your son has made progress but some people won't. My son was diagnosed at 2 however this was a long time ago.

There is a big difference between an adult with an autism dx who is able to marry, work, contemplate how their autism impacts them to someone who has little communication, can't live alone, no sense of danger etc. Recognising this difference helps with identity and with communicating needs and disability.

There is a big difference between an adult with an autism dx who is able to marry, work, contemplate how their autism impacts them to someone who has little communication, can't live alone, no sense of danger etc. Recognising this difference helps with identity and with communicating needs and disability.

I don't think you can know how substantial any differences will be when the autistic child becomes and adult though.

My DS was all of the things you describe as a child, up until about age 12 where he started to develop into the 18 year old he is today. About to go to uni (albeit living at home). So putting him into the box as a child would have been damaging to him as an adult.

I'm in my 40s and still have moments where I can't talk. Sometimes I need to process what is happening and how to respond and it leaves me unable to talk. Usually when I am out and my day is thrown into chaos (think cancelled train/error at appointments etc)

Older fathers may be making it slightly more common:

www.newscientist.com/article/dn9998-older-dads-boost-risk-of-autistic-children/

2019 average age of father was 33.6 years old - a figure that has increased for 10 consecutive years.

Though I also suspect daisycottage - the world is more busy and stressful place.

I've been back and forth to GP with DD1 as loud noises cause her ear pain and all my children complain about noise levels at their secondary - I have dsylexia and dyspriaxia but schools will only say my children show traits - GP aren't interested leaving us with private diagnosis which is out our price range. I persume their tolerance levels are higher than children with ASD but they can find schools and other busy situations overwelming at times.

I've no idea how common ASD is - but I can well belive it's been under reported in the past.