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The a word child functioning level

(37 Posts)
Lifejacket Sun 24-May-20 00:28:40

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?

TheHighestSardine Sun 24-May-20 00:39:28

Trust the doctors, not TV series (which always get everything wrong) and not random people you chat to because even if they have an autistic child themselves, they haven't got experience of the range of function.

We can't judge either, we've never met your kid.

melodien Sun 24-May-20 01:20:16

The autism spectrum isn't linear, it's more complicated than that. For that reason I don't think functioning levels are helpful. This blog explains it well blog

HavenDilemma Sun 24-May-20 01:42:16

My daughter was diagnosed in December and they said they no longer specify a functioning level

ASD is ASD

KKSlider Sun 24-May-20 01:42:24

I don't think labels on functioning are all that helpful to be honest. One DS of mine has a high verbal ability but his other cognitive skills are medium to low. He can talk a good talk at you (^at^, not with) but put him in a room and say "get dressed" or "make lunch" and he wouldn't have a clue where to even start organising that task. My other DS is more task orientated and has no trouble with a broad instruction like "get dressed" provided he can do it in a very specific, set routine and that the routine is not interrupted in any way or else he will remove everything and start over from the beginning. He also has high verbal ability but is so sensory avoidant that he has ARFID and regularly soils himself because going to the toilet is anathema to him. Neither has any sense of danger or risk awareness and no concept of stranger danger even though they can both rattle off what the rules are for any given situation, they just can't apply those rules to themselves.

I stopped watching the A-Word ages ago as it was giving me the rage because it was so unlike my own experiences and those of people I know.

Whatsmyname26 Sun 24-May-20 01:57:46

Functioning labels are hugely unhelpful for children at any stage. My asd daughter can be non verbal or have amazing verbal ability depending on the situation. There is a danger with assuming verbal ability relates to severity which just doesn’t make sense at all. You can be non verbal and very capable and intelligent or verbal and struggle with everyday basic tasks. Also I think sometimes there can be a learning difficulty alongside autism which also alters people perception Of the condition.

c0ffeeandcake Sun 24-May-20 02:25:58

My boy is 5 and was diagnosed ASD last November when he was still 4. I knew from before 6 months old that he was different. I like the A word in some ways... the impact on the family mainly. The boy in that show for me is very mild / high functioning.
It baffled me how he was able to go walking up country hills alone... wtf?! Then his diagnosis happened so quickly. Not relatable at all!
It's a silly show really... for entertainment purposes.

coastergirl Sun 24-May-20 02:33:32

I have worked with children with autism for years I actually love the A word, but I do think it's important not to think that all people with autism are like Joe. I've worked with people who have some similar characteristics, but every child is different and every child teaches me something new, pretty much every day!

One of the defining characteristics of autism is a "spiky" profile of development. So unlike someone with GDD who would be delayed/below expected for their age in all areas, a child with autism would have strong areas and things they need more support with. It's just so hard to compare and I think that's part of the reason it's not that helpful to label someone's "level" of autism. It's such a huge spectrum, varying from people with difficulties that most people wouldn't notice, to people who are very obviously autistic and maybe have learning difficulties alongside, aren't verbal and exhibit behaviours of concern. You as a parent probably have a better idea of their level of difficulty than a doctor. I also think it can fluctuate! My little boy is on the ASD Pathway for assessment. Some of the time his difficulties aren't obvious to others at all. Currently they are impacting on all areas of his life. There are so many variables.

Sorry, I've completely waffled on there!

Ponoka7 Sun 24-May-20 02:59:18

I was devastated when my DDat around 7 was described as having moderate LD's, she was moderately Autistic and had S&L difficulties. I think her SN school did judge her on her speech abilities.

She lives with me at 22. She's been an independent traveller since she was 13, it involved a bus and a train. She has done level 1-3 in a main stream college and is working part time. She has also done agency work. She is liked in work because she doesn't get into gossip or pettiness. She is thorough and logical. It's taking her longer than usual to pass her car theory, but she's determined.

If you read her education/assessment reports, you wouldn't recognise her, as she is today. I'd say the same of a number of her school peer group.

It's the same for my eldest DD, who has ADHD, dyslexia and I think she is on the spectrum.

Which is why they started to move away from the labeling. However for PIP purposes it's frustrating because in a lot of ways my DD does need daily support, but other people need a lot more, even if they fuction at a higher level.

monkeytennis97 Sun 24-May-20 03:04:09

My DS has LF autism and SLD. I haven't watched the second series of the A word but in the first the boy was much higher functioning in general than my DS, but I wouldn't say HFA.

Gemma2019 Sun 24-May-20 03:04:29

The A word annoys me immensely and I find the Joe character completely unrealistic. His comprehension skills seem very high indeed, he is very aware of danger and was even allowed to go for long walks on his own when the rest of the house was in bed. No shortage of babysitters for Joe either - his parents can just run off on a whim at any time, leaving him standing with whichever adult happens to be nearby. To try make it a bit more realistic they have added a bit of echolalia and stimming, but on the whole he is quite high functioning.

Sockwomble Sun 24-May-20 07:05:57

I think he is supposed to be 'low functioning' ( although I personally avoid the use of functioning) but he has far more understanding, seems far easier to manage and seems far more able to cope with life generally than my child.

It also doesn't in anyway reflect my experiences of the difficulties faced when trying to get support for your child.

Stinkycatbreath Sun 24-May-20 07:42:40

Through my woek ive met children with all different combinations of skills and like children each child is different. I get some children who are very skilled with communication but need nore functional help.
ASD doesn't define a child.

Joffrey Sun 24-May-20 07:45:45

I haven't seen The A Word, but this high/low functioning label I find insensitive and perpetuates stereotypes.

Yesterday I was in a queue for the post office and a woman started talking to me about posting a letter for her son's autism assessment, I responded by saying we are waiting for DS to be assessed. She described her son, who she said was 16, as having Aspergers, fine. When I elaborated that my son had been referred due to his speech and language delay, she said 'oh so he's low functioning then'. I confess I felt very sensitive about that as one worry I have is that people make assumptions about DS due to his language delay, she has no clue about my son and his development and abilities. I should keep my mouth shut.

A similar thing happened when looking round primary schools and DS starts school in September and a Head Teacher referred to DS as 'low functioning' again due to his lack of speech and language despite knowing nothing else about him. I find it offensive.

I have worked in a special needs school, I understand all people with autism are all different and like anyone have their own strengths and weaknesses. I know other children the same age as my DS who already have diagnoses of autism, they are very different to my son but that doesn't mean he won't get the same diagnoses as them.

okiedokieme Sun 24-May-20 07:49:32

Every child is different. My dd was diagnosed at 2, until nearly 5 non verbal, now at university (so you would say very high functioning) yet she cannot deal with personal care, has to be reminded to eat, routine is everything (c19 causing massive stress consequently) but is a concert soloist! If thinking about levels gives you optimism then it's fine but my advice is to never make assumptions about what is possible, they can surprise you. My DD's first sen teacher (from when she was 2) got in touch on Facebook a couple of weeks ago and is amazed that the kid that drs warned might need lifelong specialist care is a semi independent adult, albeit with an amazingly patient and understanding boyfriend who reminds her to shower and eat!

ImFreeToDoWhatIWant Sun 24-May-20 07:59:38

I've not watched the A word yet and by the sounds of it I won't bother. My son was diagnosed with 'High functioning autism' two years ago. I put it in quotes because we've found that in reality, all High functioning means is that your deficits & needs are ignored by society and professionals, and Low functioning that your abilities & strengths are ignored. Functioning labels are so, so limiting and unhelpful. The spectrum is better described as a wheel, not a line, and a person's profile around the various 'spokes' of neuro development areas is spiky - there will be strengths and weaknesses across the areas, not all at the same level which is what a point on a line, a 'functioning level', implies.

Bobbybobbins Sun 24-May-20 08:12:00

I've not watched it but totally agree that labels can be more of a hindrance than a help.

Both my DS are autistic. Elder is 6 and only started talking at 4. He can now read, do some maths etc and is very technology literate (more than me!) but still in nappies.
My younger is 4 and very little speech and understanding but is much more empathetic - will help me put washing in the machine or bring in shopping out of the car.

Grasspigeons Sun 24-May-20 08:18:34

All High functioning means is that your deficits & needs are ignored by society and professionals, and Low functioning that your abilities & strengths are ignored.

Thats so true!

Glitter7 Sun 24-May-20 08:27:52

KKSlider - my son is very similar to yours and has also been diagnosed ARFID. He was first diagnosed with SPD, I pushed for an ASD diagnosis because I knew he was Autistic at 6 months old, he was diagnosed at 4 years. No one believed me apart from my Health Visitor until they finally saw the professional report.

I personally don't watch the A word since the first episode. In my experience no child fits into a specific category on the spectrum. Just like personalities, every child is different. My child for example toilet trained very quickly however, communication was late and his processing is delayed. The reason I personally don't want to watch the A word is because we live with our gift of Autism everyday and that's how we view Autism and discuss it with our son as his gift. I watched the first episode and I realised that it just wasn't for me. I did however watch the Chris Packham documentary which I found extremely interesting. To be honest, I also feel angry that some people expect our children to fall into a specific category. I've been told in the past, "your son doesn't look Autistic," during a meltdown due to his Sensory Processing Disorder. I hear this a lot and felt so judged once I started crying. I actually stayed behind in a restaurant as the rest of the family left to explain to a lady who bought me to tears that my son was Autistic so she should not sit there and judge me when I'm doing my best to help him experience life for his future. She was completely shocked. My son used to refuse to stand on sand for example but after lots of practise he now builds sandcastles and loves the beach. There are still no go situations; children's parties (especially sitting down for food,) and mealtimes in general because he hates food, anything to do with general untidyness isn't easy either, and he won't go to the loo at school if the toilets are dirty which SENCO is a bit relaxed about.

My son also has Dyslexia and Dyscalculia and I'm trained to assess children with SpLD however, the SENCO and I differ in our opinions of labelling children. If my child hadn't been diagnosed when I realised he was, I strongly believe that he wouldn't have been diagnosed today. I'm struggling now because I was a SENCO but these days even with a diagnosis of ASD, SPD, ARFID and when I get it (which I will,) Dyslexia and Dyscalculia, you need school onside to fight for an EHCP for your child. I fought for the children in my care so why is it so hard now??????

nasalspray Sun 24-May-20 08:28:38

I hate these ridiculous' functioning labels.

Autism is Autism.

'How autistic is your child?'

'It depends what you are asking them to do'

Lifejacket Sun 24-May-20 10:44:43

Thank you all for your replies. This is quite an eye opener in some ways. Probably because I've mainly had discussions around severity previously in forums/ groups for parents whose children are classed as such.

It is a term we're used to. It's helpful because it does go some way to distinguish between someone with a dx who has just a few deficits/ on certain days/ in certain situations to explaining that the "severe" side has them all/ all the time.

I chose the a word to compare as this seems the most severe person I can think of with autism who is in mainstream media. I did not choose rainman as that is a different dx but rainman is more like what I deem severe. Headbanging, smearing, rocking, flapping, challenging behaviour, very limit communication, no personal skills, help to dress, brush teeth (if tolerated), go to the toilet, can't be left alone for any time at all.

Autism is not autism, Chris Packham et al are a million miles away from what I recognise as autism. Autism is far from a gift for us and I would remove it from my child I need the same way I would want to remove anything which hinders him and stops him living his life. For us it s a disability.

I think the labels help in the same way we distinguish people who have leg injuries. Not all leg injuries are the same, a broken nail is completely different to amputating. Different in impact and required levels of support.

I think the labelling is adverse to people who can function but helpful to those who can't. It helps to communicate level of need and support.

nasalspray Sun 24-May-20 10:45:27

It's helpful because it does go some way to distinguish between someone with a dx who has just a few deficits/ on certain days/ in certain situations to explaining that the "severe" side has them all/ all the time.

That is not correct.

Lifejacket Sun 24-May-20 11:48:14

Distinguishing between level of need and required support is helpful hence ehcp's, sen schools, assisted living, pip/ dla rates. Not everyone with the autism dx needs the same level of help.

Glitter7 Sun 24-May-20 11:59:24

I understand why you'd take it away if you could and I used to feel that way. Autism is part of my child and I personally choose to tell him it's a gift because I would like for him to see himself in a positive light rather than a negative. Autism makes life very challenging and very difficult at times, every day. It's been a huge learning curve for us and we are still learning with our son everyday. All I can say is with the right support anything is possible. My son couldn't read at the age of 7. Three weeks after starting his new mainstream school he read his first book to me. I never thought I'd hear him read. Our children can overcome mountains when we least expect it but need a good support.
My son still cannot dress himself, feed himself but he has surprised me in other ways. They are all different and we love our children no matter what. Yes I'd love to take away his Autism but it's part of who he is and it's important for me he understands that before Secondary School starts and he notices he's different or if others bully him. It's important for us that he learns to understand who he is a positive way.

Glitter7 Sun 24-May-20 12:01:53

If indeed he attends a mainstream Secondary which personally might not be right for him. We'll have to see.

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