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?

If speech is difficult you can find other ways of communicating. I forget what they are called but one of my children uses cards at school to communicate even though his ‘speech’ is advanced (n that he can talk for England about a special interest, can’t communicate needs verbally if that makes sense.

To begin working on expressing how he’s feeling start focusing on labelling how he’s feeling as he’s feeling. So if he falls over use words like ‘sad’ and ‘hurt’ so he starts to relate them them to the situation. The natural thing to do when a child is upset is to comfort them and tell them they’re ok but actually this can be really confusing for little ones with Autism who struggle with theory of mind and learn best when things are in context.

Thank you all for the tips, regarding DLA and communication.

Me and DH are about to take a course on makaton but haven't yet tried PECS or the other one, story (something?)

I will look online for some flash cards this evening.

There's no way you can tell how life will pan out for your child OP. Like everyone else, autistic children grow and change, develop issues, get over issues etc.

When my DD was little she was a smearer and wasn't toilet trained until she was 4. She went to mainstream school but it was a battle all the way. If you'd have told me back then that she'd grow up, pass all her exams and get be a fully qualified modern languages teacher I wouldn't have believed you.

My husband didn't speak as a child (still doesn't most of the time) and had violent meltdowns. He attended a special school as mainstream school couldn't cope with him. He's now a professor of nuclear chemistry and a family. Although he's a poster boy for autism.

Then there's me, sailed through school, well behaved, no issues as far as other people were concerned. Totally under the autism radar. But as an adult I've never been able to hold down a job for more than a week or two, struggle with daily living, rarely leave my house and have to have support from social services to cope.

You just can't tell. All you can do is keep on doing your best and try to keep as many doors open for your son as you can, for as long as you can.

I understand where you are coming from. And with my diverse 3 DC I often wished I had a crystal ball so I could have some idea what was going to happen and what to do for the best.

But no one can tell you how your DS is going to function and live in the future. You meet one child with ASD and you meet one child with ASD.

I would suggest getting a support network (if only via WhatsApp), ideally local who can give you advice and suggestions for things in your area. And try to listen to your son, follow his interests and needs.

There are people with ASD who are non-verbal and have written books, my own DD at Primary school I wondered if we'd ever be able to have "conversation" and we have great ones now, there are people with ASD who need lifelong support, others who have risen to the top of their profession or founded successful companies.

Getting support is hard, thats why you need a support network (NS local groups can be a starting place or local charities for children with special needs). That is where you will learn about groups, activities, support, what has worked for others, and recommendations for Psychologists, Speech Therapists, Occupational Therapists, Art Therapists, Animal therapists, lego clubs, drama groups etc etc. And they best help for form for grants and DLA etc, oh and the inside track on schools.

Communication wise I’d also encourage nursery to have a look at the Gina Davies Autism centre website and Facebook page. She developed a program called Attention Autism which is a fun approach to building attention and listening skills and spontaneous communication. I really like her approach to Autism; it’s all hands on, positive and enjoyable for both the kids and the adults involved. You might also be able to adapt some of her ideas to have a go with a home.

I'm autistic. My scores from the ados indicate I'm really quite autistic. I am married with children, have had some great career style jobs, and from the outside don't appear to struggle much (I do though).

I'm in a Facebook group you might find helpful, called Gentle Parenting for Autistic Children UK where there are lots of parents and also autistic people who can help you with questions like these.

Even though I'm autistic I still find I need help parenting my own!

My DS aged 10 was diagnosed aged 4/5. He wasn’t given a level either and I often wondered the same but it really is a spectrum. Where he struggles in some areas he excels in others.

My son was non verbal and couldn’t communicate until 5 so I guess you could say he was more severely affected. Now at 10 he talks and communicates fine (albeit a little immature for his age) so you could say it was more mild.

Whilst some things have got easier for my DS, some have got harder.

Sweeping generalisation but ND kids do tend to have a lower emotional age to their chronological age. A very rough rule of thumb is around two thirds.

Alongside not understanding the spiky profile and making assumptions about a child's capabilities, it's another of the perception by their peers and other adults thing which can be very frustrating for the child and their parents. To be told their child is immature, they are babying him, being helicopter patents and he needs to 'toughen up' when in reality there's a reason for the child's emotional immaturity.

I've just received a call from the SALT therapists, he will be having three sessions via video link starting next Monday. Very, very pleased!

I was expecting to wait another 6 months at least

Hopefully he's able to comply given that it's over video and not in person. Fingers crossed.

Good luck with the speech therapy. The therapist will also talk with you about how to develop your son’s communication skills.

I won't repeat the information that other posters have provided, but I will give you some examples from my own family that show how difficult it is to predict at three, incase they are helpful

Young child in family (male 8)
Completely non verbal at three. Now speaks incredibly well and is thriving in an autism specialist school. It's unclear whether he will live independently, but he is very happy and uses coping strategies well.

Myself and my sister (sister diagnosed at 27, I'm still awaiting diagnosis).

Both verbal at three but behind peers both academically and in terms of self care until year 3(ish). At which point we both jumped academically and presented as advanced compared to peers in everything except social skills. Both very happy with post graduate degrees, partners, and babies on the way. I especially have suffered with anxiety but it's well managed.

Cousin (early 20s, female)

Incredibly academic from the start, at a top university but suffers with managing time and anxiety.

Cousin (male, teens).

Speech appeared normal at three. Presented as slightly behind academically and was often in trouble for being 'naughty'. ASD not suspected until 14, now doing better with support but finds self regulation incredibly difficult.

It's impossible to say how your son will present as an older child, teen, and adult, but I promise he will always be your lovely son

Not read the whole thread but my DS recently diagnosed with ASD. He’s 4. Very behind in speech but he is progressing (very slowly but surely) so I’m glad that will improve over time. He has a lot of meltdowns (screaming, biting, tantrums are frequent :( ) but I wonder if it’s sometimes linked to the inability to communicate with speech.

From what my paediatrician said they can’t always tell exactly how a child with ASD will develop over time, so some children’s ASD symptoms may reduce in intensity once they’re older and vice versa. That could perhaps be why they don’t like to specify severity in younger children.

My DD was diagnosed with Aspergers and that label fits her issues well, is easily understood by others and allowed us to plan for the future ( both parents work part time, chose to space having other kids, financial planning for the future in case she is not independent). Beyond that the specifics were unclear and still are. The really hard decisions for us came with secondary education and beyond and primary was much more straight forward. Hope you get the clarity you need.

My son was diagnosed just before his 3rd birthday, he's now 11. We where given a level which I wish we weren't as it was often used as an excuse by many professionals not to try certain interventions. He wouldn't ever be toilet trained, he won't talk, he won't learn how to use a high tech communication aid so we won't fund it etc. It's not helpful as no one has a crystal ball and it's just made getting support incredibly difficult.

As I said he 11 now. He's fully toilet trained, uses a high tech communication aid to communicate in sentences (which we funded) to communicate with us and said his first verbal words 18 months ago. He's a happy young man who has come a long way but was held back due to the level he was given.