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?

Not at all op and I'd keep asking because you've every right to know that answer for your own peace of mind.
I'm in a totally different situation but I ask until I get them answers I want to know even if they aren't the ones I want to hear
But il tell you one thing. Be greatful you have a future with your child no matter what it holds or how difficult or challenging it may be. You have one so cherish that and every moment you get now as their so innocent and precious and time goes to quick ❤️

YANBU to want answers. It’s bloody hard being the parent of an autistic child and I wish there were answers (to so many things!)

Unfortunately though, there are not really answers to give you

Three is young. Really young. My autistic child looked very different at three than he looks now. If someone had categorised him then, they would probably have been wrong. He has exceeded all of my expectations. Likewise, my NT son at three would not have led to accurate predictions of what my NT son at six would look like.

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.

If it reassures you at all, neither of my children said much at three. They both now speak, read and write excellently.

I know it’s frustrating, but you really do just have to wait and see - just like you would with an NT child x

I can understand where you are coming from but I don't think it will be helpful for you to be honest. It's not a prescribed level thing, your kid can be at level 10 in one area and level 1 in another. A "diagnosed level" may give you fears or reassurances which are not appropriate.

You need to look at your child only, see where they are now and help them take the next step. It's a journey to move in the direction to help them as much as you can so for the speech add a few words first. For behaviour, step one is keeping them safe, so offering soft thing to head bang against first before working out how to replace the trait and then eventually eliminate.

It's not an easy road, just take one day or hour at a time.

@spidermomma

Not at all op and I'd keep asking because you've every right to know that answer for your own peace of mind. I'm in a totally different situation but I ask until I get them answers I want to know even if they aren't the ones I want to hear But il tell you one thing. Be greatful you have a future with your child no matter what it holds or how difficult or challenging it may be. You have one so cherish that and every moment you get now as their so innocent and precious and time goes to quick ❤️

Thank you spider. Wise words.

I'm definitely grateful to have a future with DS, whatever that may look like. He is my whole life and I adore him, struggles and all. I wouldn't change him for the world.

The reason I'm so desperate to know is because I feel it's intrinsic and only fair to give me all of the information I need in order to make adaptations and proceed with his best interests in mind.

As it stands I have no idea whether he is best placed in a mainstream school or a special needs one. I've no idea whether he'll ever be able to meet his own care needs, IE dressing and washing himself.

I would reach acceptance regardless of the severity but feel so strongly about knowing all of the facts and future prospects.

A woman I'm friendly with via one of the Facebook support groups received a diagnosis of "severe autism" when her DD was a similar age, being given that information meant she was well informed and knew what to expect, to an extent.

There is no accurate answer, that's why.
My DS appeared "mildly" affected as a child. He's bright with excellent speech and was a high achiever at primary. He found puberty very hard indeed, his anxiety spiked at 13 ish and mental health crashed at 16. He is now in a specialist college placement at 19 and is one of the most profoundly autistic youngsters there in terms of social anxiety, communication skills and independence. My friend's son was much more trouble as a youngster - very severely challenging behaviours related to loathing school, he went to special school in year 5. Now at 18 he is in mainstream college and doing much better than my boy. I always told her he would be ok as he fought against the world, whereas my boy withdrew from it. She didn't believe me then, she sees it now.

Putting some kind of functioning label is meaningless. If you are bright but in agonies over having no friends and suffering with your mental health, is that "milder" than having autism and learning needs and being very happy in an adapted setting? Too often mild autism means "other people experience my autism mildly".

Many autistic people do well despite apparently having a lot of needs. Some do badly despite apparently being more able. Some do fabulously well and go off to Oxbridge and become world leading experts in their field.

The best thing you can do is be supportive, and advocate for your son's needs.

Very different situation because my DD was only dx at 14. Her dx is ASD but we were told she would have been dx with Aspergers if she'd been dx a year earlier.

Nobody can predict what your DS will do, it is a matter of wait and see. My DD is 21 and is starting a career in accountancy. She struggles with the social aspect of working and finds it hard to deal with when she makes a mistake. I'm just so proud of her for sticking with it.

My friend's DS is 14 and mainly non-verbal. He's at a SEN school that concentrates on life skills. Wherever a child (or adult) is on the spectrum you'll find things in life to celebrate.

Sorry, this is a bit of a ramble!

The spectrum isn't linear. "High functioning" and "low functioning" are harmful because most people have things they are good at and things they are bad at (like NT people). I understand why you want answers OP, but even if you got a point on a linear spectrum, it would most likely be inaccurate and subject to change.

Attached a diagram for clarity!

Now I've attached one haha!

I totally agree. Mainstream schools are now great at dealing with this now though and they have the 1-1
My niece is mild on the spectrum and she's doing great at school and she's got a 1-1.
You do need. To know to get things in place I totally agree
X

Crossed posts, it takes me so long to type. Apologies.

Thank you for the replies.

I think deep down you're probably right Dev, in that he's so young it just wouldn't be beneficial to place him anywhere on the scale at this time.

My desperation to know has only been fuelled by seeing and talking to so many other parents who have been given the answers I wanted to know.

MsJane, what you've written about your son is reassuring and heartening. I would love for DS to be able to speak fluently and write one day, for his sake (not my own selfish wants)

Crossed posts again, this phone is so slow. Bare with me. I'm reading everything

They cant really know what your kid will be like.

But I cant tell you one experience.

I'm autistic. I was non verbal. I had severe food issues. I have lots of sensory issues, still do really struggle but I have control over it and have overcome my touch issues to achieve great things, it was hard, I had lots of meltdowns but I pushed through.

I have a degree, I run a company, I'm married, I own a home and drive. I have a baby on the way.

The key thing for me, was that autism didn't stop me, autism wasn't an excuse to behave badly, or not to achieve things. It was hard. I was uncomfortable alot, I struggled with a lot of things. But I didn't have the choice to quit, I had to push through and I did. For me, avoiding a stimulus makes me more sensitive to it. The more you push, the further you can go. Do not settle. Push push push. Autism does not, for me, mean I CAN'T do something, it means some things are harder for me, so I have to work harder.

I know someone whose diagnoses are less severe than mine, they don't work, have no qualifications, would not be able to care for a pet or a child. They sleep most of the day, are hours late for everything and seem to have no understanding of correct social behaviour and still require support well into adulthood. I believe this has a lot to do with their families "he cant help it, he's autistic" stance. But it could also be that the position he was placed kn the spectrum didn't fully describe his difficulties.

You just have to help your child be the best version of themself they can be. There's no answers for parents of neurotypicals either, they don't know who they'll grow up to be.

I know someone whose diagnoses are less severe than mine, they don't work, have no qualifications, would not be able to care for a pet or a child. They sleep most of the day, are hours late for everything and seem to have no understanding of correct social behaviour and still require support well into adulthood. I believe this has a lot to do with their families "he cant help it, he's autistic" stance

With all due respect, it's fantastic you can achieve all of your goals as an autistic person but it's still not OK to put other people down for struggling with their disabilities in a different way to you.

I must say I've found these replies much more helpful than anything the professionals have said when I've asked this question there.

Thank you, so much.

I think one of the reasons that they’ve stopped giving these answers is because it’s so hard to do it accurately.

Autism is a disorder not a delay and for therefore children with autism have different strengths and weaknesses and don’t tend to develop in a linear way. Just because other people have got answers now it doesn’t mean those answers will remain accurate as the children in question grow older. Children with autism do however often suprise their families and professionals with what they can achieve. Early intervention is key and by getting a diagnosis now you’ve got the best chance of getting the right support in place to achieve his potential.

Also remember that you don’t need to think about mainstream vs special needs school places now. Children move between the two. There are very few reception aged places in special schools but quite a lot of year 11 ones, this is because children move out of mainstream at different points depending on their needs. The best thing you can do for this over the next year is to work to get a good EHCP plan in place so that his needs will be met wherever he is placed.

@covidaintacrime

I know someone whose diagnoses are less severe than mine, they don't work, have no qualifications, would not be able to care for a pet or a child. They sleep most of the day, are hours late for everything and seem to have no understanding of correct social behaviour and still require support well into adulthood. I believe this has a lot to do with their families "he cant help it, he's autistic" stance

With all due respect, it's fantastic you can achieve all of your goals as an autistic person but it's still not OK to put other people down for struggling with their disabilities in a different way to you.

I'm not putting anyone down. I'm describing the differences. By my diagnosis I should be further behind, but that's not what's happened. I haven't called him names or said he's lazy, I've described how they struggle, quite objectively I thought. I've said why I think it is, but also that it could be that the diagnosis wasn't accurate. The whole point I was making was that the initial diagnosis doesn't dictate what the person will be.

Godimabitch

Maybe I perceived it incorrectly but to me it came across as putting down autistic people who haven't been able to achieve as much as you. If I perceived that wrong, I apologise. I agree that "high / low functioning" diagnoses are inaccurate and potentially harmful.

It's inspiring to read these accounts of people with autism having careers, driving, having families. That makes me so happy.

I feel quite uninformed if I'm totally honest. If there is a great deal of support to be had then I haven't received any yet. I received his diagnosis on a short letter consisting of a few lines, along with some brief information pamphlets.

If the professionals had found the time (and I know they're extremely stretched) to explain what you ladies have here, I think that would have helped me alot.

DS is on some long waiting lists for SALT and OT which I had to seek out and self refer to myself. Naively I had hoped that these things would be promptly forthcoming once we had his diagnosis.

We're at the start of a long journey and the uncertainty can feel a little overwhelming.

The same interventions will probably benefit all three year olds with a diagnosis or suspected autism...
Routine
Sensory diet (that isn't food but OT interventions you can do yourself) that suits your child..is he hyposensitive or hypersensitive or both for example
Singing
Reading
Playing
Exercise
Sleep
Food choices accepted (also read up on ways to encourage wider range..ie quavers melt in mouth if he hates crispy, wedges are a way of getting mashed potato phones to like potato.)
Read Out of Synch Child has Fun for sensory diet ideas (OT)

Less crowds and more 1:1 was really important for my 3 year old to thrive, although he adored soft play, rough play, tumbling too.

His tantrums and meltdowns were communicating that he couldn't process either instructions, change (ie transitions from one game or TV programme to another, or noisy busy environments or waiting in line shops etc.

Don't try and fit in, change his day to suit HIM at this stage and he will be more flexible and have more skills later.

Ds2 is at uni now studying History, and has a good social life. At 3 his language was poor his interest only in trains and cars and he couldn't do playdates at all (screamed) ate limited range.

Just to clarify on my previous post

It's inspiring to read these accounts of people with autism having careers, driving, having families. That makes me so happy

That isn't intended to patronize anybody with ASD or discredit others on the spectrum who haven't achieved those things, I say that only because some of my fears are exactly that:

That he won't get to experience life in the way of jobs, relationships, independence.

Sorry, "for example" was not related to singing reading...should have been full stop after.

As others have said it’s really an impossible question to answer. It’s also something that can change over time - one autistic child at age 3 might have higher support needs than another autistic child at age 3 but in adolescence it could be the other way around. You kinda just have to look at where your child is now and support them in the best way you can.

It can be hugely unhelpful to put functioning labels on people as often ‘high functioning’ means support needs get overlooked and ‘low functioning’ can mean people are written off. If that makes sense.

My autistic son was extremely violent from age 2. I locked myself and my daughter away and phoned the police for help many times. He had no education after primary because my local authority couldn't find anywhere to take him. He was unable to go out alone due to his major anxiety and depression, didn't hold eye contact, struggled with social norms and had sensory issues. I struggled to see a future for him even through he spoke well and was an intelligent boy.
He is now the father of a beautiful 2 year old and is amazing with him. He has made me so proud. He still struggles and needs support but is a gentle supportive great dad.
Every child is different. What is written on a diagnosis is not set in stone. Your child too will grow and their needs can and will change, take everyday and every challenge as it comes. Life is full of surprises and sometimes its amazing! (As well bloody hard!)

If there is a great deal of support to be had then I haven't received any yet. I received his diagnosis on a short letter consisting of a few lines, along with some brief information pamphlets.

This was my experience too. I recently asked CAMHS for help (where he got the diagnosis) and was told they don’t do post-diagnosis support and I’m best trying to find a charity who might help.

This is a really useful cartoon that I like that explains what is meant by the spectrum and how it's non linear.

secureservercdn.net/198.12.144.78/i87.725.myftpupload.com/wp-content/uploads/2017/11/UnderstandtheSpectrum.pdf

I'm autistic. Late diagnosed with what would have originally been called Asperger's. I live independently, work full time and have degrees. I know that I'm 'lucky'. We are all totally different and so it's impossible to say what the future holds for anyone else. Having a diagnosis and being willing to try to understand him on his terms gives you both a big head start.