Cont (2) autism diagnosis and descriptions

[OneFrenchEgg]

Continued from previous thread

I think you should consider my post in the spirit of this and the previous thread - there is no suggestion I think life is easily navigated for others with an autism diagnosis. Let's not start being snippy.

So does the neurodiversity conversation work for you/ him? The idea that it's a minority grouping along with other neurodiversities, rather than a disabling condition in itself due to impairment? I'm curious about all of this and how we see ourselves and others.

@OneFrenchEgg Neurodiversity may work better when we are discussing it in the future. He's at an age where he hasn't noticed his differences yet, and there's no reason he would. He has friends, a large supportive family, he is very independent and doesn't struggle with age appropriate activities, does not need extra assistance at school, can participate in all areas of 'regular life.' It does seem wrong, at present, to describe him as disabled. Nobody who comes into contact with DS would consider him disabled, and he certainly wouldn't identify as being disabled or much different from his peer group.

Where my DS struggles is with his social skills and hyperactivity. I'd say his hyperactivity (associated with his ADHD), is the thing that impacts him the most. I still would struggle to describe DS as 'disabled' though, when he leads such a normal life, compared to my friend's DS who is profoundly autistic.

I think secondary and adulthood is where the masking and social difficulties really became a problem (if they are going to become one). For us primary was easier and more forgiving, any differences were overcome by a shared love of Pokémon etc.

@OneFrenchEgg Did your child struggle with much at primary school? We are finding DS is very self-assured with high self-confidence. I have already thought about home schooling him through secondary (I'm teacher).

He did but it was more daily with falling out with friends that could be put down to squabbles (like choosing a game) and noone seemed to bully him or actively injure his sense of self or wellbeing. He couldn't really follow classroom unspoken rules, and didn't like some activities ('dirty' like sand or mud) but there was nothing ringing bells. Secondary it all fell apart.

I wouldn’t agree with this at all @kindercup i do think people occupy different places on the spectrum

You don't have to agree. You are wrong though.

I wasn’t and am slightly nonplused that you think I am.

Your response suggested I was elevating the struggles of one cohort above another. Not mentioning the average mortality age for people with an LD /A doesn't mean I don't recognise it. I was reflecting on the hidden disability nature of the cohort previously referred to as HFA or Asperger's.

@OneFrenchEgg That's really interesting, thanks for sharing. My DS doesn't have any issues at school, so far. Any issues he had during the younger years have sorted themselves out as he's matured... for instance, he doesn't squabble anymore, if he doesn't fancy doing what his friends are, he goes and plays with someone else or is happy to do his own thing. My DS is a sensory seeker (class clown) so doesn't have any particular aversions to activities, and as far as I am aware, he follows classroom rules well and is doing exceptionally well academically.

What did you do when it all fell apart, if you don't mind me asking?

@OneFrenchEgg I think the difficulties are more aligned than in other areas, both groups fail to access medical support/treatment due to their disability.

Hi - we didn't realise really, until it hit crisis. With hindsight all the signs were there of quiet autism - avoiding things, retreating, squabbling and falling out, avoiding sensory input, but we didn't realise. School started ok but there was a delayed response to all the change which escalated to a mental health crisis and being hospitalised for some time at a young age. That was quite dramatic, from initial tapping/tics to ambulances within months. I think we were blindsided tbh.

@Itisbetter this is true. My original point was that the suicide rates indicate a clear difficulty (if we generalise about 'higher' functioning people) even if needs aren't apparent. I think it was around ND and not disabled rather than in comparison to others on the spectrum.

14x3

Education changes then and some of the learning difficulties that spread across neurodiversity kick in . We got told it’s quite common. Also years of masking, handling chronic anxiety, not being able to identify or handle emotions, social difficulties, depression….the list is endless. It creeps up, hidden self harming, suicidal idealisation, hidden eating disorders….

Absolutely is a disability. Isn’t an area of life autism hasn’t impacted, held back and made hugely difficult. If you get by during the younger years it gets to a point where it just can’t continue.

Very early, probably before 18 months. Diagnosed at 2.5 3 months after we finally got a referral.

How did you know it was severe? As I said I think my son would fit this description, not knowing how our life will be is so difficult

@doadeer my ds was obvious at 18 months he was only dx at 2 years because it was local policy. The majority of families I've met where the kids are severe and obvious at a very early age still have children/ young adults who are severely impacted later on. Some hit some milestones but the children still have significant needs. There are exceptions so that doesn't mean your child will be severely impacted In the future, you just don't know. There is the story this week In the news about the man who has become the youngest Cambridge professor.

If I could give you any advice it's don't give up, get as much support as you can, get "good" speech therapy, "good" ot inc sensory and get an ehcp in place with all needs listed in section b and provision to meet them in section f which is so clear it cannot be misinterpreted as to what should be provided (specified and quantified) if you haven't already. Therapies do help, if your ds is non verbal look into aac.

Concentrate on what you can do.

Thabks, we flagged concerns before my son was two, he was diagnosed before he was 2.5 so we have been known to the system for a few years now. The SLT and OT are absolutely useless. It's just 40 mins of them telling me to keep doing what I'm doing. None of them have aac training. We have one for him and we use it every day but he hasn't grasped it yet, he isn't interested. But we keep trying.

He has an ehcp, we have pushed for everything we can. I'm still not clear whether he has a learning difficulty. He is so fast on his ipad and can do quite complex things. But he struggles with every single aspect on day to day life.

We've been "given permission" he can attend a specialist school, even that we had to fight for. It's crazy how crap the support is.

@doadeer it sounds like you need an early review of DS’s EHCP as it isn’t currently good enough. If DS has an EHCP the SALT and OT can be included in there with the therapists’ training, qualifications and experience written in there. Did DS’s EHCP not include an EP assessment? That could look at whether DS has a learning difficulty.

I think people trying to blame the LD instead of the autism is misguided. I work in settings where we detain under the MH act the most severe behaviours requiring sometimes 5:1 ratio of staff are all people with autism and LD.

I think I’m getting confused and not following the conversation very well. “blame” for what? (Genuine question not “challenge”). Maybe outcomes? It’s apparent to me that people are often confusing LD and autism (not just on this thread, and many don’t seem to see much distinction if the person doesn’t communicate verbally.

@Itisbetter I’m confused too

I find this whole topic confusing in general though and I have conflicting views within myself

I don’t think you can separate autism from its comorbidities because the overlaps are so big. Even if we did I don’t think it would change much - other than probably lead to more buck passing because people will blame issues on something else.

the key factor when young is ensuring that an ehcp is in place that is water tight and the setting is the right one. None of us know what will happen in the long term but all that we can do is fight for what is needed at that point

I think the key thing is to love and enjoy the person you have and REALLY question what is right/wrong for them. This may be because our ehcp is not helpful and has been a recurring source of misery for all of us.