Cont (2) autism diagnosis and descriptions

[OneFrenchEgg]

Continued from previous thread

I'm not sure what the solution is, but at present 'Autism' seems too broad to be of much use to anyone. A diagnosis requiring a ton of additional information, caveats, corrections, doesn't seem particularly helpful.

Violent and Challenging Behaviour.

What is it you think they all have in common that is useful either for funding, research, treatment, support or prognosis? I mean what on Earth is the point of the dx at all if it has no internal boundaries? Even the levels are so open to interpretation that most people say at some point “well I kinda fit all of them some of the time”.

Oh I see thanks. My DS3 has VCB. Although interestingly I consider his autism to less severe than DS1. I think it’s because DS3 has better communication, manages ok in MS, and in the future I can see him being able to work and live independently. He’s much harder work on a day to day basis though.

@Itisbetter I spend my life explaining to teachers/parents/friends that DS has 'x' trait but not 'x' trait, struggles with 'x' but not 'x'. So far his ASD diagnosis is proving to be a waste of £2,000 in terms of practical day-to-say support and understanding.

A diagnosis requiring a ton of additional information, caveats, corrections, doesn't seem particularly helpful.

Maybe not, but that isn’t unique to autism and wouldn’t change even if you broke the autism diagnosis down into different groups.

What is it you think they all have in common that is useful either for funding, research, treatment, support or prognosis?

Well they all meet the diagnostic criteria - “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” that “limit and impair everyday functioning”.

Obviously prognosis, support and treatment varies depending on individual needs. But that would be the same even if you broke the diagnosis down into different groups. I’m not sure what funding you mean, but if you mean e.g. funding linked to an EHCP then it is dependent on need, not diagnosis. Even if the diagnosis was broken down researching one particular group will still have a wide range of presentations.

doadeer · 27/02/2023 06:59
Those of you with older children, when did you know the autism was severe?

Opposite to some, when DS2 was early teens. He was diagnosed at 3.5, but the general opinion from professionals at first was that his autism was moderate. Puberty and the onset of epilepsy coincided with a regression of sorts, in that he just became ‘more autistic’. At 20 his communication has improved in that he has enough spoken language to make his needs known to those who know him well, but he is far more ‘disabled’ by his autism than he ever was, and has also developed severe anxiety which is equally, if not more, debilitating. No one would ever describe him as anything other than severe now, though the word most often used is complex. I do sometimes mourn the carefree little boy he was, but we have accepted that this is our reality now and work to support him as much as we can.

@LaBelleSauvage123 DD1 was definitely 'milder' when she was young. 'Complex' is used a lot with her.

Lougle I guess life is simpler when you’re very young anyway. There’s not as much difference between you and your peers even if you do have learning disabilities. And then there’s all the added complexities of hormones and changing relationships with parents. DS2 has actually become more able in some ways - he’s much more assertive and able to communicate his basic needs and wants - while at the same time being much more disabled.

In lots of ways it was harder for ds when he was younger because he couldn’t communicate but younger children can still be picked up when overwhelmed, they can be in a pushchair when tired, no one is scared when they shout, and nobody thinks they will be safe with knives or roads or in the path of swings. People are kinder to little ones. And there’s puberty and “what will you do next”.

Yes, people expect less from younger children and you can strap them in a buggy, pick them up, dress them, bath them.

You can’t do that with a 15 year old. How can you make them change their clothes, wash, eat, leave the house? You can’t. People (family) tell me I need to ‘make him’ but I don’t know how.

I'm lucky, I guess, that the combination of DD1's multiple voices ('her' voice, the sing-song voice, and the American accent voice), her slightly odd gait, her 'floaty arms', and her total disregard for social convention, means that people around us who know her well just accept that she's DD1 and she marches to the beat of her own drum. If we go to my Sil's, she says hello, then marches straight up to their bedroom and we don't see her until we go home. To expect anything else is disaster.

I never have to explain that DD1 has SEN anymore. Everyone seems to just clock it immediately.