To want to know what the future looks like for my autistic child?

[Olivere]

My lovely son age 3 has been diagnosed with ASD.

When I asked where they felt he was on the spectrum I was told that they no longer answer that. They categorize all new diagnoses as Autism spectrum disorder and no longer indicate where that child is on the spectrum, whereas they used to, and still do in the USA and other places.

I feel it would benefit me to know what our future might look like because everything seems so uncertain and confusing.

He has some speech but it is very limited to asking for what he wants, IE "juice, dinner, dummy, chocolate". There is no back and forth communicating. He scripts. Head bangs. Has alot of sensory processing issues and struggles alot day to day with aggressive meltdowns.

I'm in several support groups and so many of the other parents there have had diagnoses such as Aspergers, level 1 autism, level 2, mild autism, severe etc.

Is there any way for me to identify or ascertain where my little boy is on the spectrum or do I just have to wait and see?

It makes me sad and frustrated that other parents were given answers to these questions and therefore have something of an insight into how things might look for them moving forward, but I don't have that.

I feel lost.

AIBU to want these answers?

i went to some training recently that suggested that in future people won’t be diagnosed with ADHD / ASC / PDA etc; it will simply be ‘neurodiversity’. I prefer that, tbh.

Fuck that. You cant group different mental illnesses under 1 and the same umbrella. That is f-ing unhelpful and just plain wrong.

Neurodiversity isn't a mental illness and autism frequently goes hand in hand with adhd/add. I'm autistic with adhd, but you can't separate the two, so I'm neurodiverse, which is a far more fitting term.

Neurodiversity is a type of brain functioning, not a collection of diagnoses like mental illness.

It's inspiring to read these accounts of people with autism having careers, driving, having families.

what is that supposed to mean in relation to those who are low functioning?

I explained in a subsequent post. I mentioned that because those are personal worries of my own, that these things may not be possible for DS. It is heartening to know that those things can be possible for people on the spectrum.

This is all new to me. I don't mean to offend anybody. I will be proud of DS whether he is high or low functioning and regardless of what he achieves.

i went to some training recently that suggested that in future people won’t be diagnosed with ADHD / ASC / PDA etc; it will simply be ‘neurodiversity’. I prefer that, tbh.

so my severely impacted low functioning child is not disabled anymore but neurodiverse??

how is that helpful. I think people need to understand that ASD is a massive spectrum and whilst some manage to live full life's (career, friends, family, independence) some are so severely impacted that they need lifelong 24/7 care. I don't think the neurodiversity movement is useful at all.

It is heartening to know that those things can be possible for people on the spectrum.

IME it is a lottery as to whether your child also has learning difficulties and if so, to what extend.

But looking at friends with HF children, a very high number suffer from horrendous MH problems on top. They may be top in their class for maths or so but they are often desperately unhappy. In many ways, my low functioning and happy DD has a much better quality of life. It's not a binary think with ASD of having normal/high IQ equalling a fulfilled and happy live.

Once you are thrown on that path and have been there a few years down the line, you will see a lot of things much more differentiated. It's not all black and white.

It's virtually impossible to put a classification on an autistic person because abilities can vary so much. All you can do is wait and see and try to get the best out of them. Have a look at Temple Grandin's writings. She gives a good insight and advice about autism because she was a non verbal, profoundly autistic child, but has gone on to do great things. Autistic people can do a lot with the right support and placing them in appropriate situations that they can deal with.

I'm 50 and autistic and I used to be very capable, but menopause has made me regress so much it's unreal and I hardly recognise myself now.

I do see what you're saying flattyres, of course DS being happy is much more important to me than anything else.

My DS was diagnosed at 8. The signs were there from 2 or 3 but everyone assumed it was something like dyspraxia. Primary school was a bit tough (more for me than him!) as he struggled to relate to his peers and was socially isolated (he didn't seem to mind though). There was a lot of speech therapy, social groups, occupational therapy etc but in the end by around year 5 he started making friends (well only 1 proper friend) and in year 6 he suddenly surged forwards academically. In year 4 the school talked about him not doing SATs as he was so far behind but I always said he should do them and he got almost top scores in everything.

Now he is in year 9 at a mainstream school (he didn't need a specialist school in any way). He has a group of friends (many also autistic), is very social, does well academically even though he is quite lazy and he is a funny and interesting young man. He has his quirks and still stims sometimes when he gets excited but it doesn't seem to have affected his life really. He is still obsessed with computing but it has served him well and he is top of his class and is already doing some of the GCSE work (his teacher used one of his projects to show her ALevel students how to do a particular type of coding).

We were told his autism was severe. Looking at him now I can't believe that is true!

so I'm neurodiverse, which is a far more fitting term.

for some but not for others on the spectrum. I honestly think the whole diagnostic frame work is too wide now. Someone with low functioning often non verbal ASD has actually nothing in common with those at the high functioning end of the spectrum. Totally different conditions which impact very differently. I don't really understand how this can be the same diagnosis.

I understand when someone with HF ASD might say they don't see it as a disability/condition as such and this few is often highjacked in the media where those who are able can and frequently do express their views but how does that help those who are too disabled by their ASD and their carers. I just feel DD's diagnosis got 'watered down' .Impossible to get support, kids/school holiday activities for kids with ASD are all now for those who are HF. It's like those with low functioning ASD don't exist anymore.

He's quite delayed in some areas but in others I dare say he's maybe a little bit advanced? Like knowing his ABC and being able to count to 30 before the age of three

It's known as a 'spiky profile' and is one of the giveaways for neurodiversity. People who know nothing about ND tend to think well if he can do x so well, he ought to be able to do y and z to the same level, but it doesn't work like that.
neuroclastic.com/2019/07/05/autistic-skill-sets/

Functioning labels, levels etc are pretty pointless. Every autistic child is individual and has different levels of need in terms of their speech/communication, sensory sensitivities etc. They also grow and change like neurotypical children! My autistic boy was a very different child two years ago at 3.5 compared with now. His speech has improved massively, he soaks up new words and uses them correctly. His speech is still behind his peers but he’s starting to correct his own mistakes (whereas in the past I would repeat what he said, but correctly).

He's quite delayed in some areas but in others I dare say he's maybe a little bit advanced? Like knowing his ABC and being able to count to 30 before the age of three

Look up hyperlexia. It may not be rote learned as a previous poster has suggested. My son’s only vocabulary aged three was “stuff”. Numbers, letters, shapes, colours. Turns out he could read but I didn’t realise, because his speech was so behind. His reading ability is off the scale (even if he doesn’t understand what the word means). He’s gifted with numbers too, can multiply three digit numbers in his head.

He does still have many challenges and we do struggle with meltdowns some days (although they are fairly few and far between). I wouldn’t change him, he’s brilliant.

There are no answers to give! My ds was diagnosed at 3 with severe learning difficulties and autism............that was 10 years ago.
I never thought I would hear him speak or get him out of nappies but things are very different now. He will never live independently but he has made so much progress. I wanted answers to all the questions at diagnosis too but the reality is that you just have to celebrate each milestone and achievement as it comes. It is a very rocky route to travel and there is no map, sometimes you go backwards and sometimes round in circles!!!

I will look into Temple Grandin's writings and the other resources reccomended, thank you.

I'm worried I may have caused some offence with my post and that makes me sad as it wasn't my intention. The last thing I would ever want to do is to come across as insensitive or ignorant.

My eagerness to know how severely DS will be affected as he grows was only ever from the POV of wanting to be able to plan ahead, understand what we are dealing with and adjust our lives accordingly so that I'm able to best meet his needs.

If DS never talks fluently, never drives and never has a job then that doesn't matter. If he is happy, as settled as possible, and enjoying life then I'm happy. If DS has a learning disability or receives further diagnoses as he grows then I will embrace that too.

I love him just the way he is.

I just wanted clarity and to be able to understand him better as we have received no support at all and nobody has ever taken the time to speak to me the way you ladies have here, so thank you for that. He received his diagnosis and then no further support at all, for either of us.

I'm listening and taking everything on board.

My eagerness to know how severely DS will be affected as he grows was only ever from the POV of wanting to be able to plan ahead

if the professionals involved cannot tell you, how can internet strangers? I am sorry you are not getting support. I have to say this is unfortunately pretty standard on the NHS. We had next to nothing over the last 13 - 14 years apart from help at school via an ehcp?

When is DS due to start reception? will it be 2021? if you are on England, I would put a parental request in to get en ehcp assessment. It takes about 6 months to get in place (if smooth sailing, years if not)

DS attends an independent nursery at the minute, they are beginning the process of applying for an EHCP for him. That was the plan regardless of whether he was diagnosed or not as he struggles alot day to day. I'm grateful that he now has the diagnosis.

I've been told to apply for DLA as they (nursery) said that if he is awarded that will add weight to the EHCP.

SALT should be happening within the next 6 month's, OT I'm not sure how long.

He isn't due to start school this year, he has only just turned three. We have a bit of time to (hopefully) get a plan in place.

I've been told to apply for DLA as they (nursery) said that if he is awarded that will add weight to the EHCP.

No, these are completely different and have nothing to do with each other. Also, a DLA application takes months and wouldn't help with a ehcp now.

Google and download the Cerebra guide to DLA to complete the form. Don't do it without (or get help from a benefit advisor to complete it). Be prepared to be refused when you apply and also to be turned down when you go for the mandatory reconsideration. We (and many others I know) only got it when we filed an appeal. It's pretty standard.

Thank you flat, I'm going to look for the Cereba guide now.

The fact people often get turned down is why I haven't been in any rush to apply.

I'll set aside a couple of days in the week to go through the form.

I understand why you want answers, I really do. But if the paediatrician who diagnosed my son with ASD told me at the time what was in store for him long term she would have probably been wrong. Not because she’s a bad doctor but because like any child, my son has changed over the last nearly 5 years. Your son will change too no doubt. My son barely spoke at the time, had violent meltdowns that lasted for hours where he hurt himself and those around him including me and his sister. He wasn’t properly toilet trained, he had the emotional understanding of an 18 month old toddler. Harsh as it sounds I never expected him to improve on any of that at the time. The paediatrician was cagey about whether he would. He has improved though, massively. He’s still never going to be in mainstream school due to various issues but things have changed for him- most of it to do with his learning environment at his special school but some of it because he simply changed as he got older.

@flattyres

You don't get to set the autism narrative. Functional labels are not acceptable anymore.

The fact people often get turned down is why I haven't been in any rush to apply.

if you get an award and you have to go to the appeal, the money will be backdated to the date you apply. so the quicker you get the application in the better. It's money which can be used towards therapy. also, if you don't work, you would qualify for carers allowance (admittedly a pittance at £67/week) if your DS gets at least middle rate care. It not means tested in any other way but purely goes off your income alone.

You don't get to set the autism narrative.

neither do you

if functional labels are not acceptable, how would you refer to someone who is non verbal, severe learning difficulties, needing life long 24/7 care???

No, but I'm part of the wider autistic community and people in that community deserve a say.

Autistic people prefer to describe autism as needing x level of care.

Just because I can string a sentence together and make a cup of tea doesn't mean that I'm not struggling in the extreme and suicidal most of the time.

You experience your child's autism as 'severe' I experience my autism as 'severe' because it limits my life.

These threads always descend into a neurotypical race to the bottom in terms of how severely affected their children are, therefore people like me can just stfu. It doesn't work like that anymore. We have a voice now. I also have an autistic child and an adhd child, so I know how it works in terms of parenting. I'll have lifelong care of my kids as well.