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?

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

I am not arguing that but I am my child's voice because she doesn't have one. Or should I stay quiet because I only care 24/7 for someone with severe autism who cannot express herself (she doesn't even understand she has ASD)? Where is the voice of this who don't have one?

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

you seem to assume that all autistic people seem to have an insight into their condition to be able to voice that preference. newsflash: that is simply not the case

why can some on the HF community not understand that ASD is not a uniform experience???

@flattyres

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.

But lots of HF children don't have huge mental health issues. As I said my son has lots of autisic friends. I'd say the MH issues are 50/50 and to be honest as teenagers thats not unusual. My dd is 16 and most of her friends have MH problems including her. In fact my DD has had a far tougher time as a teen than my autistic DS. So much depends on personality types as well as autism. My friends DS is very sensitive and has huge anxiety and school refusal issues (he is autistic). DS and his two best friends are not anxious kids at all. I don't want the OP to think mental health problems are inevitable because they aren't.

But lots of HF children don't have huge mental health issues.

I didn't say that those with HF ASD end up necessarily with MH issues. I just tried to make the point that it is not as simple as having HF ASD = all will be smooth sailing and well vs LF ASD = impending doom and gloom.

You honestly cant tell at this age. The doctors cant tell. Other autistic people cant tell. You need to assume that he will need extra support to learn some things, but at 3 years old, hes barely a toddler and it wont do anyone any good to start mapping his life out. You could just as equally be limiting him as you could putting too much pressure.

My adult son was diagnosed as aspergers when he was preschool. Back then you definitely got a more accurate diagnosis.

However it isn't the most set in stone diagnosis. It is educated guessing.

We were told he would never be in main stream school. He did normal state school from reception after some intensive speech training from a lovely therapist.

It was always suggested throughout his childhood he would never be independent from us. Especially when he was at secondary. He is now working full time and very independent. Latest pay rise means he earns more any of his cousins that haven't had his issues.

Remember to let your child be themselves. Get help if it is needed but try not to let a label define them. Society will want to put them in a box. Your job as they get older is to keep their opinions open.

Not being unreasonable to want them but it's not a simple matter. DS2 started school still in nappies and with limited social skills. So did my friend's son, same age. DS now has a Master's degree and lives independently, friend's son in 24 hr supported living. It's too early to make accurate predictions, sorry.

Should add they attended the same (excellent special) schools until age 14

@farawayplanet

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.

Erm, this one hasn't?

Hey,

Please don't think that you have upset anyone, this topic is always one that has diverse and opposite opinions :)

As an autistic adult who was diagnosed after her child, I have been through a huge learning curve over the last few years, about myself, autism, neurodiversity and all things related.

The general consensus amongst the autistic community has been that functioning labels (high functioning,low functioning etc) are not helpful as we all experience life differently. Someone non-verbal with low bodily function could still have a PHD and run rings round so many of us academically. At the same time, someone like me who has a successful career, family and a seemingly great life actually is falling to pieces most evening due to anxiety, covid, imposter syndrome brought on by being undiagnosed for so long and having meltdowns that are pushing my marriage to its limits.

As someone further down discussed, autism generally comes hand in hand with other neurodiversity diagnoses. I always explain it like a flower with petals, the centre is your primary diagnosis, autism in my case, and the petals are all the extras, anxiety, depression, adhd, sensory processing disorder, audio processing disorder, interception challenges and hyperlexia for me for instance

All the diagnoses make up your profile, sometimes those who are considered low functioning have some form of learning condition or an additional condition which attributes to the label as well as the autism contributing to it.

I hope this helps a little, the topic is one people are passionate about and have opinions about. The most important thing is to find voices that help you understand and explain whilst trying to be less judgemental and a bit more diplomatic, a challenge in itself depending on the neurodiversity 🤣 I am always open and honest to a fault but I do try to temper it with diplomacy as much as I can if not too overwhelmed!

My lo got an aspergers diagnosis just before they stopped giving them and I'm really glad he did (plus dyspraxia). I appreciate there can be overlap with ADHD, ASD, dyspraia, dyslexia etc but I'd still want to know which he had and what issues he was likely to face. He didn't get diagnosed till just before starting secondary and has coped so well. He struggles with friendships and has no interest in 'hanging out' but he loves his own company or being curled up with a book. He sees words as colours, makes up words that are combinations of other words and a hundred other cool things. Fight for information OP and enjoy him x

My child was diagnosed with ASD age 2.5. He was given a 'score'of 37 out of 41 which put him in the severe category. I remember being shocked at the time because I would have guessed he was about medium. However now, 11 years later, he is definitely very severe so in hindsight the score was useful and really quite accurate given his young age.

I will try to look up the name of the scoring system.

Mine didnt speak until he was 8! Severe speech sound delay which resulted in him being destructive as he was so fustrated. 1 on 1 at primary. Hes a teen now and is doing perfectly fine. He goes to a normal secondary school, has friends, he still dislikes loud noises but he can cope, last lockdown he got posted an award for being one of the top kids for submitting the most online homework. I know now he will be just fine, he can go to uni if he trys hard, but back then I would cry and couldn't imagine him ever even being able to speak let alone be independent. I hope your son has a full and happy life xx

Oh and he speaks bloody beautifully!

The thing that will make the most difference to your DS is intervention and strategies that will help him cope with his difficulties, so in arranging for SALT and other therapies, you're already doing the best you can for him.

I've never heard of any "levels" beyond the most basic severe/moderate etc, and frankly I would have thought that any paediatrician hazarding guesses as to the outcome of any child with autism is setting themselves up for a hard fall. You simply cannot tell how well a child will do. There are simply too many variables; anyone's circumstances can change in a stroke and so many things have an impact on how well they'll be able to learn and cope with the adversity life throws at them.

All you can do is support your child as much as you possibly can. Find out what he needs, find out what's available out there, push for any intervention that would be beneficial for him. The school he goes to is massively important; some are supportive and proactive in seeking out outside specialists and getting additional training for their staff, looking for all the ways that will help your child stay focused on his learning (whether that's numeracy or social skills or sitting calmly on the carpet). Even simple things like where his peg for his coat is - on the end of the row where it's less hectic, or just anywhere where he could be more likely to be overwhelmed? It all makes a difference, and a school that listens to you and offers sensible adjustments without prompting will be worth its weight in gold. Use this time now to be looking for a school with a good reputation for SEN; speak to other parents in a similar position for the lowdown on which ones will shelve your child or even try to make you move them elsewhere, unfortunately this isn't uncommon.

Our paediatrician told me the only predictor he would use to gauge (to himself) which children would do well was the parents.

YANBU to want answers. There must be regional variation about how diagnoses are given - my DS was diagnosed (age 8) in 2020 and though the paperwork says ASD the diagnosing team told me it would be Asperger's if they still used the term and to read literature around that for further info. I hope you can get some more info OP, maybe it is because he is so young they can't confidently tell you more?

It’s so hard OP. As this thread shows there is no telling.
I have young adult neurodiverse children.
The discussion has reminded me of taking one DC for a hearing test as she couldn’t speak clearly at nursery. Nobody except me could understand her. Child turned out to be academically able but has lots of other difficulties. Not having a learning disability does not mean no disability. Far from it. It does mean they can have a good go at hiding their issues which costs them enormously as well as helping them do things.

Transitions can be difficult or a relief or a mix (school, college, university, work). Old problems can come back like friendship issues.
Some contexts which seem a good fit (tech setting) can have baffling politics and other settings that are more people focussed have turned out well.

I have friends with ND kids and we have found that they have been quirky, preferring the company of adults when they are young but as they become adults other adults are less accommodating which makes the social stuff more challenging and increases anxiety.

I know that this will all seem a long way off but just want to chime in with everyone else saying you have to roll with it and think about the next 6 months.

I must admit I do find the whole low functioning/high functioning, neurodiversity, Aspergers v ASD minefield confusing, and overwhelming at times. I used to follow a lot on Twitter but had to step away as I couldn’t cope with it all.

I do understand where you are coming from @flattyres it’s exhausting parenting a child who has aggressive meltdowns and poo smears and then have someone ask what their autistic ‘superpower’ is and tell you about a child they knew with ASD that went on to get a 1st at Oxford. That seems so far removed from my world right now.

On the other hand I am an autistic person with a 1st class Masters from a top university. I have a wonderful and husband and three wonderful children 2 of which are autistic also. Yes, I struggle but not as much as my children do so I guess you could say that I am less autistic than them? I dunno.

But then when you think about Aspergers, really that wasn’t a useful label at all. People when they hear Aspergers think intelligent, maths/science geek, socially awkward type autism. The type of person I am I guess. But really the only difference between the diagnosis of Aspergers and the diagnosis of autism was a language delay. My eldest son did not have a language delay, in fact he is hyperlexic so would’ve been diagnosed Aspergers but he is nothing like your stereotypical ‘aspire’. Honestly I’m not sure he will ever be independent, have a job, marriage, children or even gain any qualifications. If people made assumptions on my son’s ability based on label of Aspergers rather than ASD they would be way off the mark. And yeah, then there is the whole spiky profile thing and schools saying ‘he has the reading age of a 17 year old (age 10) therefore he must also be able to do X and Y’.

Not meaning to cause offence to anyone just trying to say this topic is actually one I find so terribly confusing myself and I have conflicting views.

Also regarding DLA. Phone for an application form, you then have 6 weeks from that date to submit your application and any money will be back dated to the date you phoned. I did this at the end of September and 7 weeks later we had our first payment. When filling out the form it is important to highlight how your child is different from a typical 3 year old. For example arguably most three year olds do not dress themselves independently but what do you need to do over and above the help given to typical three year old.

And I spent 5 weeks filling out the form so the decision took only 2 weeks we got middle rate care and lower rate mobility.

@Olivere

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.

The cerebra guide is really really useful for this. You can always appeal a decision not to award.

Ask your child's paediatrician or nursery key worker to write the supporting statement, they will back you up.

Evidence everything that you can.

You are right Rita that the spikey profile leads to assumptions that the problems are due to lack of effort.
One of my DC got a diagnosis of ADHD plus other stuff but in the very next school report the form tutor wrote

“Greyjunior needs to be more focussed and organised.”

Angry tears from DC who would so love to be more focussed and organised.

It is incredibly confusing although I have taken alot from this thread, mainly that I need to stop wondering/worrying about what he may have been categorized as.

it’s exhausting parenting a child who has aggressive meltdowns and poo smears

This is what DS has been doing in recent months, fortunately only ever during the day when we're awake and able to intervene. He is nowhere near ready for toilet training but thankfully he doesn't smear every day.

I do some SALT-inspired activities with him every day and he has made some good progress since starting nursery. He can tell me what most things are when asked. I'm cautiously optimistic that his speech will develop enough so that he can better communicate his needs.

He's good with requesting food and drinks etc but can't tell me why he's upset so can only express himself by lashing out.

why can some on the HF community not understand that ASD is not a uniform experience???

Because they're autistic. It's called theory of mind and is one of the core deficits of autism.

Havnt read everyone responses but for me the hardest bit was not knowing what the future held. Same as you op. What do I need to plan for? What support would be most appropriate for DC etc. What can I do to give him the best life for him?

We found intensive salt fab in nursery year. DC was lucky enough to get into a special programme and had salt 3 times a week with therapist or in a group then daily sessions in nursery. DC was headed for a speech and language unit for primary but that year made all the difference for him and ended up talking fluently. He is in mainstream with 1:1 support. Surprisingly always been a social wee body who seems to attract other kids though he is struggling more now nearing end of primary. I'm at the place you are all over again. Does he need to go to special secondary? Will he cope with mainstream secondary even with 1:1. I had to fight for a dyslexia diagnosis as school just assumed it was his asd that he couldn't read. Ended up going private for that. Ultimately trust your instincts. I knew DC asd wasnt a cause for him not bring able to read. Turns out he had auditory problems and doesnt hear sounds so have found programme to work on that

OP there is an online test you can do for toddlers to try to work out where they are on the spectrum

www.autismspeaks.org/screen-your-child