AIBU to ask the signs that you child has high functioning autism

[poppypoppet2020]

My son is 12. When he was a toddler he used to put his hands over his ears during singing as he couldn't stand the sound. He still can't stand it now. He also hates the sound of pencils and has had to use erasable pens since he started learning to write. He also has a very sensitive sense of smell and literally can't bear certain smells. He is quite introverted, but then so am I, and he also has a tendency to daydream and is obsessed with certain things like Minecraft and wants to talk about it all the time, but then so do a lot of children. I think he has a lot empathy and is mindful of people's feelings. In comparison to his brother, he is very different. He is very stubborn and not easy going about anything. I think his sensory issues and obsessions make me wonder if he has autism albeit high functioning. Or are these just typical 'quirks'?.

It's genuinely different for every child. For example, DD2 can't cope with surprises. For her birthday this year (13) I discussed it with her and she asked that everything was put in one bag, unwrapped. She knew what every present was, and wanted to watch me pack them into the bag. Then the next day, on her birthday, she very happily received her presents, one by one, unwrapped.

DD2 gets 'peopled out' extremely fast. She was in tears because we had arranged to have lunch with my parents, then DH mentioned that her grandparents abroad would probably like a Zoom call, then my sister decided that she needed to see DD2 on her birthday. DD2 was in floods of tears because all she had planned was visiting my parents for lunch.

DD2 is extremely shy. I wanted to go out for breakfast today, but she pointed out that the place we were going to is always busy. She said she'd rather stay home and have cereal. She then said that she wanted breakfast at the place, but couldn't cope with the number of people. In the end, she was reassured by the explanation that social distancing means less tables.

I have found that it's getting better as she gets older, because she can send me text messages to tell me what a problem is, or explain it, which means that we have less meltdowns.

The hardest part of getting assessed was the referral process. Once I bit the bullet and referred myself, the process was quite quick because it was so clear to them that she has ASD. She was on the list for 2 years, but we actually only had 2 appointments - the initial 'chat' appointment, and the formal assessment. They skipped all the other appointments because there was so much evidence on the referral form and her presentation was so clear to the worker we saw.

My 12 yo only uses a laptop now. He does have high functioning autisim. So high he wasn't diagnosed until last October.

"High functioning" refers to IQ and lack of significant speech delay. There's no such thing as being "so high functioning they get diagnosed late." It literally means your son doesn't have a learning disability, that's all. It doesn't mean "passes for normal/mildly autistic/less autistic than other autistic people."
There's no such thing as one "high functioning" person being more "high functioning" than another.
Not that "high functioning autism" is or ever was a diagnosis anyway. It's a descriptor, not an actual diagnosis. Before the diagnosis would have been autism or Aspergers. Now it's all ASD.

Both of my kids were diagnosed quickly, my eldest (son) then aged 10 within 5 months and my daughter then aged 9 within 7 months.

Both have sensory processing issues and whilst I could see it at the time both have significant communication issues.

As a baby DS didn't make much eye contact, he does now but it is taught and inappropriate. My daughter never smiled looking back at baby photos.

As they have grown older the differences in communication have become more apparent. Superficially they are both fine. My eldest is extremely anxious, he struggles with his peer groups, doesn't understand their humour (although he has a great sense of humour), he can have great empathy but sometimes he doesn't. He can't read facial expression or tone of voice. I had no idea he was autistic until he was 10 and couldn't mask at school anymore. No one at school or out of it would have thought he had autism until the mask fell.

Because my daughter is younger and my son was diagnosed it was easier to spot it with her. I did extensive reading and she fit the bill on all counts. As a young child she identified with animals more than humans. Had strange collections of things and ascribed human emotions to inanimate objects. She has a vivid imagination and often communicates through stories and made up characters rather than discussing her own feelings. She is highly sensory. She can't bear many noises, the feeling of things etc.

She is extremely empathetic, in my household she is the one who is constantly concerned that I'm OK .

She is immature compared with her peers and won't talk or make eye contact at all unless she knows someone or there is a point. She had periods of being elective mute at school.

Remember that 'high functioning' isn't a very useful label in terms of the autistic spectrum, it refers to IQ not to the severity of the autism.

Both of my children are educated at home because the school system failed them. I am very worried about their ability to be fully independent in the future.

My 12 year old was diagnosed last year.

Very sociable, wants to please people. Tries a little too hard to get friends (will give money away etc)
Very black and white thinking
Very literal, if I say it's been raining all days he'll immediately say it didn't rain between 2pm and 3pm for example. Or if I say it's 3pm he'd say its 2:59 not 3
Struggles to differentiate between accidents and deliberate acts
Delayed speech as toddler
Fixed eye contact, doesn't blink a lot when he talks to you, quite an intense stare
Will go too far with jokes sometimes
Just seems a little socially 'off' but hard to put finger on
Enjoys playing with young children, more comfortable in these situations without having to constantly try to understand social etiquette expected by his age group
Genuinely a lovely boy, very caring, empathetic (can pick up on if I'm feeling stressed /upset etc and respond appropriately)

It's really interesting. DD2 learned eye contact through the use of the lollipop lady. I used to say "We look at the lollipop lady, we smile, then we can look away". She used to bounce on her toes and grin when she was uncomfortable, so the teachers all thought 'she's so happy with me!'

She refused to come bowling today because, to her, summer holidays are a relaxing break from school, not a reason to go places. When I said that I'd be sad if she wasn't with us, she said 'yes, but I'd be sad if I came....' so she went to my parents.

She adores animals and has compassion for them beyond that for any human. She says that when she's older, she wants to live on an island with her animals, where she has to row a little boat to collect her groceries.

She used to bounce on her toes and grin when she was uncomfortable, so the teachers all thought 'she's so happy with me!'

I really wish teachers and medical professionals had more awareness of autism beyond poor eye contact. I know some do but they're few and far between in my experience. Your description really struck a chord with me. It pains me that people thought I was fine in a situation or was happy because I was smiling (or grinning like a maniac - which was totally out of my control.) If they had ever given it some thought they would have realised I'm not naturally a smily sort of person and am usually very reserved.
Even now when i know and understand this it can still be hard to make other people understand. Even when i can explain i get "but you look happy to me."
Yeah, and i just told you I feel like I'm dying inside, but apparently they know better because i "look fine." 😡

@JanMeyer

She used to bounce on her toes and grin when she was uncomfortable, so the teachers all thought 'she's so happy with me!'

I really wish teachers and medical professionals had more awareness of autism beyond poor eye contact. I know some do but they're few and far between in my experience. Your description really struck a chord with me. It pains me that people thought I was fine in a situation or was happy because I was smiling (or grinning like a maniac - which was totally out of my control.) If they had ever given it some thought they would have realised I'm not naturally a smily sort of person and am usually very reserved.
Even now when i know and understand this it can still be hard to make other people understand. Even when i can explain i get "but you look happy to me."
Yeah, and i just told you I feel like I'm dying inside, but apparently they know better because i "look fine." 😡

I know. I'm so sorry that you experience that. DD1's SENCO said in an email that 'DD2 was so good at telling us how she was feeling last year....'. No. DD2 said whatever she had to say so that you would leave her alone.

I think I may need this thread ! We are due to have an Ed psych come to the school in September and I am expecting some kind of processing ASD diagnosis... we've just had another bedtime battle where he just doesn't want to do anything I say. It is very wearing.

I know. I'm so sorry that you experience that. DD1's SENCO said in an email that 'DD2 was so good at telling us how she was feeling last year....'. No. DD2 said whatever she had to say so that you would leave her alone.

With autism in girls and women talked about more you'd hope things would be better in this regard. But for all the "awareness" it doesn't necessarily lead to more understanding. With all the information out there and blogs/books/youtube videos from autistic people explaining this stuff themselves there's no excuse for professionals to be so ignorant and to have such narrow outdated views of autism.
I get that we can't expect everyone to be experts but surely it's not unreasonable to expect that professionals working with autistic children (or other SN) will educate themselves and be aware?
When you get comments like that from people who are supposed to be professionals, it makes me wonder why i bother trying to get any help from anywhere.

@Bessica1970 in reply to your question, my son only received his diagnosis in June last year. It said ASD, specifically Aspergers. I was surprised as whilst we were going through the Umbrella Pathway process I had read several threads on here and other places and everyone was adamant the Aspergers diagnosis was no longer used.......We are Worcestershire.

JanMeyer Fri 21-Aug-20 23:45:14

My 12 yo only uses a laptop now. He does have high functioning autisim. So high he wasn't diagnosed until last October.

"High functioning" refers to IQ and lack of significant speech delay. There's no such thing as being "so high functioning they get diagnosed late." It literally means your son doesn't have a learning disability, that's all. It doesn't mean "passes for normal/mildly autistic/less autistic than other autistic people."
There's no such thing as one "high functioning" person being more "high functioning" than another.
Not that "high functioning autism" is or ever was a diagnosis anyway. It's a descriptor, not an actual diagnosis. Before the diagnosis would have been autism or Aspergers. Now it's all ASD.

Thank you for posting this. HFA is so unhelpful in my opinion. Most people seem to think it means quirky maths genius. if you are impaired enough to receive an ASD/C diagnosis than you must be struggling to function with something.

My DD was diagnosed with ASD (not Aspergers which she would have been previously, not HFA) with SPD at 8. If you met her when she is coping and masking you might be surprised she has a diagnosis at all. She can be charming, funny, articulate and loves a good debate. She is top sets for humanities and english but hates maths. She avoids eye contact when she doesn't want to engage and will go to any lengths to avoid demands put on her to the point where she was excluded from school at 10. Appears very sociable but is exhausted after social interaction. Autism is so very, very wide that it is is really hard to generalise.

We don’t use high/low functioning, or the term Aspergers anymore.

BuggerBognor I wasn’t having a go at anyone in particular. HFA just grates on me. My DD I have been told is top of her year for English, and her history and RE/ethics teachers are wowed by the quality of debate she brings to class. However she has a TA, can’t remember to brush her teeth and doesn’t care to shower, has only just learnt to tie her laces and was still having poo accidents in year 6. I have often heard the phrase ‘spiky profile’ 🤣.

BuggerBognor My DD is nothing like Sheldon apart from her deep affection for family and carefully selected friends. She wants to be a stand up comedian or a politician. She is amazing and makes me laugh out loud every day 😄.

There are a lot of interesting comments here, and good descriptions about their own Aspergers/Autistic experiences. Mine are similar. On the point of "Aspergers" as a diagnosis, our diagnosis has both "Aspergers" and "High Functioning Autism" and the CAMHS Psychiatrist who diagnosed DS said these terms change over time and so she would put both so there would never be any doubt what the diagnosis is. As I understand it, DSM-5 has removed the term Aspergers (and I think some others too) and placed everything under ASD (Autistic Spectrum Disorder). Sometimes I use the term Aspergers and Sometimes ASD. I don't like ASC because he has a diagnosed Neurodevelopmental Disorder and I feel labelling it as a Condition is understating his very real difficulties.

Regarding diagnosis, there is some useful information here:

www.autismspeaks.org/autism-diagnosis-criteria-dsm-5

www.autism.org.uk/advice-and-guidance/topics/diagnosis

My 8 year old has a diagnosis of high functioning autism/aspergers/ asd. All the terms were mentioned on his notes. He was referred aged two. He completely doesn't understand when he talks about minecraft constantly that people are sort of zoning out. Also uses the same phrases repeatedly in one sentence, i.e literally, technically. His latest report saw him self regulating by rocking from foot to foot. He's very reclusive and would happily never leave the house unless it's to a book shop or specific toy shop. He repeats lists of when all the pixar films were made and who directed them, and makes spread sheets rating them from 1-10. He stands too close to people when talking. Moved conversations to his favourite topics even if others aren't interested. Very black and white view on things, like when I ask him to look at his spellings he says, I know how to read so I can write, glances at them the morning of the test and has always got 10 out of 10. He struggles to dress himself, cannot be in the room if someone is eating something he hates the smell of like popcorn. Eats the same fifteen foods, none of them wet. Eats the same for breakfast as for lunch. Has a compulsion to always have things in his mouth so is always always asking for food and if we say you've had enough he chews his shirts to ribbons. Hospitalised a few time for constipation and enemas, the longest he went was sixteen days holding it in. This is just off the top of my head. He has some tics, his teacher asked me if he had tourrettes as he was shouting out randomly in class 'I love school!' Even though he detests it. He saw his little brother fall over and said deadpan in a monotone voice 'you have won a bronze medal' which made me giggle. He has picked out the university he is going to and has been planning for it since he was five. He remembers every single place and time (even from when he was two) he was bought or given something from his collection of cars. He used to speak with an American accent. Such a huge spectrum but he is extremely empathetic and a joy to be with, unless you have a headache as he's very loud

My ASD girl
Extreme food pickiness
Difficulty sleeping
Makes a plan and not willing to compromise
Some subject matter obsessiveness
Misses some social cues
Very clumsy
Poor spatial ability

She is extremely intelligent. An educational evaluation At age 9 put some of her skills at university level.
Friendly
Shows great empathy
Loves being social

The evaluation labeled her condition as mild. In many ways, it doesn’t really impact her life, but having the diagnosis helps us parent her the way she needs instead of the way society says we should. It also helps with a few accommodations at school.

I’m not remotely worried about my dd. She is very much like me. Her evaluation process definitely shown some light on my own personality and what labels might have applied if I were born in a different generation. While I have struggled in certain ways and don’t fit in very well, I have an immensely successful career, a wonderful husband, and a happy life.

Oh and my dd hates singing. We don’t sing happy birthday to her. She refuses to sing in music class and even gladly accepted a “punishment” of having to write an essay when she refused to perform in the school choral show. She does not have stage fright and will happily give speeches to large crowds, she just hates people singing.

@Terrace58 my sons can't stand plans changing or spontaneous outings either. We used to have to drive exactly the same route home from nursery and he'd have a meltdown that used to last an hour after we got home if there were diversions or roadworks. when he was little blind bags were a constant stress aswell. He always chose one with a certain picture on the front expecting to get that inside and just couldn't understand when we said you don't know what's inside. He couldn't talk til he was nearly three and a half either so was always frustrated poor boy.

My DS was diagnosed with Asperger's at 12. He is now 25. Twice in the last couple of years he has been asked to provide evidence of his diagnosis. It is striking how little has changed.
He functions well in his chosen field, but still has the social difficulties he had as a child, particularly monologuing and failing to notice if people have switched off. He is proof that people don't 'grow out of' autism, but do learn to adapt as they get older.
I wish people didn't place so much emphasis on eye contact. He can look a person in the eye because he was told it was important, but completely fails to read facial expressions because he doesn't look at the whole face, and wouldn't pick up on them well if he did.
There is lots on the internet, including You Tube videos, to help people understand autism.
I haven't seen anything about how Poppypoppet's DS functions at school. This is often where problems come to light, and in my DS' case the school pushed for his diagnosis and subsequently his Statement (before EHCP came in).

My favourite sign is the lower ability to construct a believable lie/False explanation. Like all children my dc sometimes want to fib. The NT one can construct an alternative explanation for what happened to the cake that takes some time to unpick. The ASD one, despite high IQ, is found out much more easily...

There's probably enough here to warrant further investigation...

My ASD kid was extremely obsessive about special interests from a very young age. Was slow to hit milestones for walking, running, jumping etc. Slow to speak and continues to have issues with concentration, receptive language etc. His ASD profile has dyspraxia traits (ASD is a hugely varied condition - so there's many issues common to autistic people that he also doesn't have.)

The lack of empathy thing is a bit of a myth -DS definitely has empathy and a wicked sense of humour....