The a word child functioning level

[Lifejacket]

My son has always been referred to as severe/ low functioning/ classical autism. Following another thread on here I got into a conversation with another mum of a child with sen who said that now my son can use verbal comms (join 2 words for a request) he's more middle than low. I know it shouldn't matter/ doesn't change him etc but these terms help describe my son and there is a big difference between people with the same dx. The child on the a word is supposed to be a similar age to my son but the character is portrayed as having more independence/ self care skills and better communication and understanding. For those of you with autism in your lives where would you place the character?

@Glitter7 my apologies, I understand why you try to establish his dx in a positive way. I do find it upsetting when people see it as a super power etc and try to paint it all in this amazing light when for some it isn't. I'm glad you've got some good support, you're right it does make a difference. Best of luck and I hope you find a good secondary placement.

My dd (11) was dx last year. She comes across as very articulate, excellent memory, very intelligent, particularly in maths, to people who do not know her, and indeed some people who know her very well, they don't see an issue. She masks and copies behaviour so succinctly that you really need to watch closely to see. She used have quite bad meltdowns but recently, over the last two years has shutdowns, and it's during those that she becomes non verbal, she stims frequently, self harms, has three personalities traces, really angry - lashing out; submissive and needy - including baby talk or ignores completely. I'm glad that we have the dx, I understand her most, but I worry for the future. People who see her as high functioning think that she's capable and is mucking around.

@Grasspigeons that's an interesting way to look at it. My son doesn't have a learning disability dx tho, he has a severe autism dx (level 3 in the new dx). I've been told that he can problem solve and he can learn but his autism gets in the way. Eg he can decipher many words in many languages, he is hyperlexic, self taught however even where we know he understands what he has read eg "sit down" he doesn't apply it to himself (I believe, as explained to us) because of this autism. I truly believe that if his autism was removed he would be without a learning disability. The severity of his autism impacts on his ability to learn.

In reality he is viewed as having learning disability even though there is no formal diagnosis if is taken for granted.

I think if a child has autism and a learning disability the two interact so much that it is very difficult to know what role each plays in a child's presentation and behaviour. Although if you don't support the autism it is also likely to be impossible to get past any difficulties created by the learning disability.
Although my child is considered severe in both, he does have unexpected talents eg he is very good at remembering routes and will shout at you if you miss a turning on a familiar route, even doing this as a young toddler in his pushchair with the hood down so he couldn't see much.

Lifejacket - I absolutely agree autism can impact on some people far more severely than others. Its just that wasn't my understanding of what the high functioning /low functioning labels described in particular.

The level 1, level 2, level 3 thing makes more sense if you are discussing how much the autism itself effects someone as it seems to relate directly to the triad of impairments. If you just say 'someone who doesn't talk is more autistic than someone who does' it doesn't really work as there are lots of people who can't talk that are not autistic at all.

Another Mum I know has an Autistic son (same age as my son,) who understands everything he's being told and will follow instructions easily but he is non verbal. My son is the opposite. He can talk but processing spoken language and following instructions is a huge challenge for him. They are all very, very different. My son for example says "the birds singing in the morning, hurt his ears," and yet I love this sound, but I don't have Sensory Processing Disorder. My son also has great empathy for others but can be hyper sensitive, he notices; tones in voice, looks exchanged between people, he will comfort someone if they are upset. He does not understand why some of his peers physically hurt him or why they'd want too (mind you neither do I to be honest!) He's very caring and loving.

I think as a family some days are easier to accommodate than others if you can prepare and pre determine what may happen it can be a good day. However, one day it might be that a different postman came or, the shape sandwich had the wrong filling inside or maybe a play date has been cancelled, and in the space of seconds your child's whole world can suddlenly become very disappointing, upsetting and you're trying to calm them. I've learnt to preempt these situations as much as possible but I can say I struggle with organisation too, so we take each day as it comes and try and be as organised as possible.

X

I really don’t think it’s ok to label children high or low functioning. My ds is autistic and I got a bit annoyed a few months ago when a friend of mine said oh he’s obviously high functioning as he’s sat there with an iPad. She has no experience of kids with SN so I just brushed it off in the end, but I don’t like the fact people assume my son’s difficulties are lesser than those of children who present on the surface as what you’d call low functioning. I don’t think of my son as high or low functioning but like all children on the spectrum he has his strengths and difficulties. Whilst he is verbal he has social communication difficulties and whilst he has a basic understanding of danger, that understanding goes out of the window if he becomes upset or overwhelmed. The head teacher at my ds’s previous school had the nerve to sit across from me at a meeting and say my ds probably doesn’t have autism as he isn’t like other autistic kids in her school. As for Joe off the A Word, my ds is similar in some ways but completely different in other ways.

I find the problem arises with other people and their interpretation of what they think "High Functioning Autism" means. It's not a 'you'd never guess s/he's autistic' description, yet that's the way a lot of people misinterpret it, including many who should know better.

It means having autism and an IQ of over 70. That's all.

I found this quite informative. "The study, the largest of its type, shows that individuals deemed high functioning often have poor ‘adaptive behavior’ — the ability to perform basic tasks such as brushing teeth, tying shoelaces or taking the bus.
The term completely disregards the difficulties these individuals have on a day-to-day basis,”
more at www.spectrumnews.org/news/large-study-supports-discarding-term-high-functioning-autism/

Also see the attached graphic, it's from an article about the spectrum here neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

Autistic people are wired differently, each one is an individual so won't fit someone's preconceived ideas of what an autistic person can and can't do. Slowly, the levels of acceptance of peoples' differences will grow, but I don't think we're there yet.

It’s difficult in that for many disabled people using the word severe is important for the person who may be needing to know the information. The difference with Autism is that it becomes more than a descriptor and personal. I use severe learning difficulties to avoid the wording link of mild and severe. TBH if I could remove Autism from his diagnosis I would, it is much more of a hindrance than a help. He will be in a residential school soon because of the severity of his needs as he is severely disabled because of Autism.

@Lifejacket
Totally understand why you feel the way you do with the Headteacher. We chose my son's previous School for the staff, unfortunately once they retired a new Headteacher took over and even though my son had his diagnosis she took away ALL of the support previously put in place "because he doesn't have behaviour problems and isn't a risk to his peers," there was no consideration about the fact he can't process instructions and comments in his book were "why have you stuck in a Year 2 learning objective when you're a Year 1." Often no work in his books and after a number of meetings explaining I thought he was being left to fail, I was told to "wait and watch." In the end three parent volunteers (two of which are teachers,) said that my son was being left to do his own thing. He was often missing from class but the staff hadn't noticed!! When I bought this to his teacher's attention and the Headteacher they laughed and said "oh yes we often find him wondering about." I was FURIOUS! The staff were more concerned with which parents had reported this to me rather than the fact that my son had been wondering around and it took for a volunteer to notice!!

My son is now thriving at his new school. The Headteacher is amazing and although the SENCO and I don't always agree with the timelines on getting things in place for my son - she works extremely hard and I know she is right - I need to wait. The previous Headteacher went through 5 SENCOS in two years, four of them left who were brilliant and one was absolutely rubbish. The IEP she gave me was so bad - I hadn't seen an IEP as badly written in 14 years which I admitted when she told me I was "pedantic." The IEP I was handed, had no specific targets recorded and no time measures of when these "fluffy" targets would be carried out (weekly for example,) by whom, and on which days and intervention times and staff initials were all MIA. I was disgusted. So different to the previous SENCO. When I questioned how my child had been getting on with his previous targets and mentioned the name of one of his interventions which should have been happening 3 times a week for 6 weeks the Headteacher, class teacher and new SENCO had no idea what I was talking about!! Absolutely rubbish and they knew right there and then - I knew they were letting my child down.
Two members of staff told me the previous Head said she was "overwhelmed with happiness, when I removed my son." How unprofessional. I thought she'd be upset from letting a child down which is how I'd have felt! I can honestly say I am overwhelmed with happiness now too because he's flying! He misses his friends from that school, who we did see until lockdown, but academically his new School, the Headteacher, teachers, SENCO, staff are AMAZING!!!!!
I personally think his new Headteacher now, will become a superhead very soon - I think she's like gold dust. I just hope she doesn't leave or retire like the first Headteacher my son had because you never know who may take over.

Although a difficult decision, my son has coped academically with the change but misses some of his old friends. I think if school isn't supportive start looking at other schools. The Headteacher we have now is like the first Headteacher and Deputy my child had before he retired. She is wonderful! She held hands with my son's and skipped off into the distance. I knew I had to move him but even with all the evidence mentioned above I was worried the change would be too hard for him. Eventually socially he will find his friends however it will take time.

Sorry - not lifejacket - that was for Nicnick