When is learning disability considered profound?

[jess1975]

My ds is 5 with a diagnosis of asd and severe learning disability. However compared to other kids with same diagnosis he sticks out like a sore thumb. So much that I'm beginning to wonder if his learning disability would be considered profound. He spends his time playing with ribbon and string and mouthing everything in sight. He can watch a little tv and loves to swing and climb up and down on jungle gym. He also loves to bounce. He can not yet sort by even one criterion, nor can he match. He still cannot do a 4 piece puzzle . He can exchange one or two pecs card for a drink and a snack but usually requires a prompt and does not yet travel with pec. He puts shapes into an open sorter but recently can do the square. Everything is hand over hand apart from basic posting. Basically his progress is at a snails pace. Anyone else have a child with a profound learning disability?

It is really difficult to say just based on a few lines, but what I would say in general is not to think along the line of profound learning disability because it could be he could do better with right support. The brief description you give reminds me of my DS at about 4 yrs. it turns out that in spite of big social and communication difficulty he is quite bright. For us, ABA worked. I trained myself (by a professional) and I could see from her first visit she could make him do things no one succeeded before. The fact your DS can differentiate between 2 PECS card possibly means he has the visual skills to match, he may not understand what he needs to do (this was the case for my DS). Maybe you could try reduce your expectation at first and increase gradually (match 2 pairs) and give big reward/praise. also my DS gave up on pecs; I think that by the time he realised he had to put all cards on sentence strip, give it to me etc he just couldn't be bothered. We replaced with makaton sign and worked better as more spontaneous. All this to say, don't give up trying to find the right type of support, because it may make the difference in the rate of progress. All the best

Those with a profound learning disability are generally very unresponsive to their environment. DS2 was similar to your DS at that age and, in fact, couldn't use PECS, then. There was no suggestion that his learning disability was any more than moderate to severe though.

Now he's 9, he's reading words, googling for videos and, currently, pestering me for yoghurt. Again

I don't think there are exact definitions tbh.
I work in Special Ed however and generally the children we would describe as having profound LDs are those who have multiple impairments.. so usually needing complete physical care as well (no mobility, often limited or no vision, tube fed and very limited response to their environment)

My class have a mix of children ..as described and as you describe your son, and generally I would think of him as primarily ASD with SLD but a big ?? as sometimes children can, and do change and develop incredibly over time.. it's not set in stone that's for sure. (And in fact it it's one of my favourite groups to work with because of that!)

Hi all thanks so much for taking the time to reply. I attend many sn groups with my little boy and have yet to meet anyone else quite like him. He has very little awareness of people around him and at our last appointment with his consultant she said that school was just about meeting his many sensory needs. Speech and language have said he's no real desire to communicate at all which makes thing very very difficult. It's heartbreaking to see all other children miles ahead who have also been diagnosed asd and sld. His school is outstanding so its not the case of not getting the correct support. However he is a super happy little and that means the world to us. It's not an easy journey but I sure do love my tour guide.

There are several children in the ASD classes within the SN school I work in. None of them are classed as profound. The profound learning difficulties definition within the school and PLD classes is children with poor or very limited mobility, non verbal and a range of complex medical needs in addition to that.

BTW, my DD aged 3/4 was similar to your son. She is nearly 7 and doing well in mainstream. Has disordered, very delayed speech and very poor social awareness but academically is holding her own.