ASD levels?

[MS261996]

Hi,

Long post!

I have seen posters talk about levels on here, I don’t think that’s a thing here in the UK but how do they diagnose these levels and differentiate the severity of autism if the children are evaluated at a young age?
Does this mean, the more or less traits they have determines this? Do these levels apply throughout life or do they often change?

I have an 8 year old son who was diagnosed with autism when he was 2, and I was told he is severely autistic and most likely won’t talk. I always felt like this was a wrong perception of my son, as he never had any challenging behaviours due to sensory or communication issues but was quite obviously delayed in all areas. He started talking at 6 and can now be understood by his family and some adults, other children don’t understand him as he has dyspraxia. He doesn’t understand concepts that his 6 year old sister does, and doesn’t understand societal norms like waiting your turn, not saying what you think out loud and so on but he understands everything else.

I hear a lot of parents say how hard it is having a child on the spectrum but I have never found my child difficult, only when he was a toddler and he was quite aloof and no communication skills what so ever. But he is my easiest child and so I am wondering how could he have severe autism and without severe impairments in some areas (apart from speech) I know this is based on my perception and not what is actually going on on his head, but we have good communication and he tells me when he feels left out, or different, or having a hard time... such as he doesn’t like me to video him talking because he’s self conscious of his speech.

I know people don’t like saying HF/LF because it is not helpful but there is obviously children who have many challenges associated with the LD that comes with their ASD. He does act different than other children and a lot of people say to me ‘I knew straight away’ when I tell them but apart from that I have hope that he will be able to live independently as an adult.

I have a 13 month old, who has every trait of ASD and is very obvious, where as my sons was more subtler but was picked up at 12-18months. Now I am seriously worried about my daughters development as her traits are far more pronounced than his and many people would probably described my 8 year old as moderate, but if his speech was typical I would say HF . Does this mean more than likely that she will have more challenges than my son? Or can it go either way? She has been seen by the HV since 10 months, again at 12 months and was referred for SALT and autism assessment on that day. Isn’t this quite early? My son was referred at 18 months and had lots of people involved before they made that decision, where as they didn’t even bother with my daughter and she is younger. Many of my families children, are on the waiting list which will take between 1-3 years but they are between the ages of 5-7. I know she has a strong family history but it has been picked up at such a young age.
sorry if I have offended with the terminology but it keeps changing and people talk about ASD in different ways.

Can anyone tell me if their child displayed many traits when they was this young, and how they are now... will she have some independence and have friends? I love her so much and because she doesn’t give eye contact and won’t engage most of my family forget she is there compared to my other children and it makes me so sad for her. I can’t teach her anything because she has poor eye contact and won’t sit down and engage, she laughs and smiles to her self, but I don’t get smiles, cuddles or kisses, and I am very worried. I know I have answered my own question with my sons journey but it is a spectrum and It’s driving me crazy thinking in his case, this is a one off. Any advice/ experiences would be appreciated!

It is the DSM-5 that uses 3 levels. You can find an explanation of the levels here.

Typically when someone uses severe autism they mean someone who has a comorbid learning disability i.e. has an IQ less than 70.
 Although people use it to mean other things, all high functioning means is the person doesn’t have a learning disability i.e. has an IQ above 70.

Just because someone’s traits are more or less visible doesn’t necessarily correlate with whether they have a comorbid LD. It could also be that you are more alert to signs and aware of DD’s development given DS’s diagnosis. As well as the more visible traits the earlier referral may in part be related to DS already having a diagnosis and the longer waiting lists.

I’m not sure if this is really going to answer your question but I became a bit obsessed with levels when I first had concerns about my daughter. I have been told by absolutely every health professional that I have come across, that they can’t predict what my daughter will be like as an adult from how she is as a toddler. So I’ve eventually had to make peace with that and take every day as it comes.
I don’t think how traits are displayed as young children really gives a good indicator of how a child will be as an adult.
You may hear about levels being given with the diagnosis in the USA but I believe this is to allow the child to get the right level of support they require at that time for insurance purposes. So a lot of kids who are non-verbal will be given level 3 diagnosis’s because they need a lot of support with their communication. But really the Doctors over there don’t have anymore insight into the future than we do over here.
I thought my daughters traits were really obvious bur I have had a lot of people tell me they would never have noticed. I think it’s hard for us parents to have an accurate perception of that in some cases.
I really wouldn’t worry about your your daughter being referred at a younger age, it means the professionals are doing their jobs. Autism can often be diagnosed pretty young quite easily but the waiting times in this country make the average times a lot later than they should be.

@LargeLegoHaul and @Lil115 thank you for your responses. It’s more the delay than the stand alone traits that concern me, as my son wasn’t as delayed at this age compared to her but he still has significant learning disabilities. He was assessed as 22-36 month range for personal, social and emotional at 4 years 9 months and his thinking and learning skills at 36 months was in the 13-14 month range, they have stopped doing that now but I would say he has made lots of progress since then. My daughters is obvious to everyone in her life, and has been for months but we noticed things like not being held, won’t cuddle, kiss or smile, my mum suggested autism about my son when he was 12 months but because he loved affection, he seemed sociable and didn’t have any obvious sensory issues at that age his wasn’t really taken notice until 18 months. The family members that are being assessed now, had no visible traits or challenges until about 5/6 years old and one is exceeding in all areas at school, that’s why I am worried that she will be far more delayed in learning because she is quite obviously delayed now. I can’t play people games and engage her, I found it easier to teach my son because he could be held, and sit on my lap but she won’t stay near me bless her and I do get down to her level but having no success at the moment, I have tried putting her in the high chair she looks away or at the lights or loses interest quickly. Again any insight into how to help her would be great, thanks!

She’s very young so it’s definitely difficult to predict anything for the future. For now, just try to tap into whatever she’s interested in to build up the engagement. You mentioned she likes lights, so you could do a game with lights, like like hold light up toys or something similar up to your face and use a lot of pausing when switching them on, to give her the opportunity to look at you. She might not but that’s ok. As she gets older the engagement will most likely increase. My daughter loved singing as a baby so I just sung all the time to get her interested in me. She was quite like as you describe your dd when she was a 1 year old. I remember I could have danced around in front of her and she wouldn’t have noticed me. She’s only 3 now so can’t offer any insight into further down the line but she has progressed hugely. She’s so much more in tune to what I’m doing and we can do things like play games and sing songs together.
I don’t pay much attention to developmental ages, they are based on neurotypical standards and are not actually measuring what a neurodiverse child’s true capabilities are.