What they were like at 2 compared to now- ASD progression...

[Heytheredelilah1987]

Hi all!

My son is undergoing diagnosis for Autism; he is just under 2 and I'm wondering how he will progress... I know no one can really say for sure ...but I thought if I asked what your kids were like at my sons age and now (whatever age they may be) it'd perhaps help me roughly gage a progression!?

So quick low down on my lad :
At the minute he's a biter - mainly himself- he can bite his arm until it's bruised and doesn't appear to feel pain, he is fixated by things, goes into his own world an awful lot, plays with things repetitively , walks on tip toes , stims , regressed with speech, uses Echolalia a bit, has severe tantrums regularly, is extremely loud, doesn't socialise with other kids, lacks eye contact with people, doesn't seem to recognise/ get concerned by others emotions , doesn't point much, screams and clenches fists if people sing or there's a lot going on around him for example, pockets food for hours , very particular about clothes , has meltdowns in crowded place often, climbs a lot, goodness I could go on and on but basically he has MANY asd traits and several professionals have raised concerns and his aunt (a consultant psychologist ) agreed autism is highly likely.

He does make eye contact with me though and he does like rough and tumble kind of play and being chased. He's also affectionate in his way and on his terms and he's generally a happy lad. Laughs a lot! So there's lots of promising behaviours ... he's able to follow simple instructions too.

But yes - so this is a rough pic of my lad right now ... curious how he will be come the future? Once again I know no one can really say but if you guys would be happy to share you experience of what your kids were like then and now it'd be sooooo helpful! Just generally quite curious too I guess!

Thanks in advance!

[Namechangeemergency]

I have a 13 year old with ASD and I have worked with under fives with ASD for many years.

All children continue to develop, even those with the most profound disabilities. Its a matter of degree.

One of the things we tend to forget is that kids develop emotionally and socially as well as physically. So we can look out our kids and imagine them as much larger versions of themselves but with the same behaviours

All children with ASD are different, as those without are, so its impossible to say how your little boy will progress. 2 is a particularly tricky age because there are SO many things going on developmentally-wise.

If he is following instructions and enjoys interaction its unlikely that will change dramatically. He may change the sort of interaction he will tolerate and he may choose not to follow instructions in the future but if the understanding is there, its not going to disappear (this is very rare).

His social skills may come on but a dx of ASD means that they won't ever be 'typical'. How that 'looks' as an older child is hard to say. My DS loves his mates and is very sociable. That doesn't mean he is able to function normally in unknown social situations.

I could waffle on all day but I think the key thing is that all kids with ASD are different and your DS is still very young. No one can tell you what he will be like when he is 5, 10, 16 etc.

Sorry

[Heytheredelilah1987]

Name change- thanks for the feedback. It's promising to hear his comprehension etc will continue. That's certainly something !

Frusso- again thank you. It's fascinating to hear just how much they can come on over the years. You're right though- the social and communication issues will always be there I guess.

[Heytheredelilah1987]

I just struggle with the not knowing. I know that's selfish, but I do.

[Namechangeemergency]

Most parents stuggle with that in the early days. It probably the most common question I am asked 'what will they be like when they are school age' etc

Its difficult telling parents 'no one can tell you' because you feel like yet another professional fobbing them off.
But if you look at it in a more positive way...... one of the few times we can tell a parent with any certainty how their child will 'look' at 4, 8, 15 etc is when they very severely disabled.

Even then you can't be sure unless there are clear physical and neurological issues that will make certain functions impossible.

You are in the first stages of diagnosis. Very early days. You need time to get your head around things. Your feelings are perfectly natural.

[Heytheredelilah1987]

Thanks name change that's promising to hear I am not alone in this pondering and worrying!

[coffeemachine]

this question drove me potty when DD was 2.

but to answer your question, at 2 Dd had no words, very limited understanding. not toilet trained, no play skills, clingy, tantrums 24/7, no communication, not sleeping, delayed echolalia...
now at almost 9 she talkes and understands (albeit at the level of a 4 year old). she is behind in school (good 3 years behind) but is reading and writing, she does have severe learning diffs but is really doing well. she is sporty, she can ride a bike (no support weels), can swim (oy doggy paddle but who cares).

At 2 I was hoping for her to be 'near normal' (we got dx at 4) and she is very far off but she has come on so much more than I expected.

I have known DC who were similar to Dd at 2. Some of them are 'fine' now, some are far more severe than DD. unfortunately, nobody can tell you...

It took me a few years to let go of the "what will she be like in X years time question."

you are in the early stages of dx - by far the touchest I found.

[Heytheredelilah1987]

Thanks coffee. What you explain is exactly how I feel! It's so comforting to hear I am not alone in my fears. I'm pleased your daughter has come on so well. I find it so hard that there's no indications of what way it could go for my son!

[WellTidy]

DS is 4.7 now.

At just under 2, he was displaying very, very few signs of ASD. His eye contact was fine, he was well behaved, very placid. Its just that he had no spoken language, and was disinterested in other means of communicating eg signing.

He has an ASD diagnosis, and is developmentally delayed. He is towards the more severe end of the spectrum.

At 4.7, he has spoken language, albeit largely ecolaic. He can count and understand quantity, missing numbers in sequences etc. He is starting phonics. He can sort, match and do jigsaw puzzles. He is toilet trained. He struggles hugely with flexibility and is very rigid in his requirements eg to head in a certain direction.

I struggled a lot between him being about 3 and 4, as everything seemed so daunting and uncertain and I was so, so sad for my beautiful boy and for his NT elder brother too. I knew that life was going to change forever for us all. You're not alone.

[Heytheredelilah1987]

Thanks Well tidy. I am sorry you struggled as I have. I imagine we all must as parents- to varying degrees!

Ds also exhibits behaviour that suggests he struggles with change ... he gets upset if we change direction when out walking etc.

I guess it's a bit of a mixed bag isn't it... some progress and others don't. Only today my brother asked me if perhaps DS seems to be gaining more autism traits or if it's actually I'm just more aware? I'd say both....

[AntiQuitty]

On his second birthday ds2 couldn't follow any instructions, no pointing, no joint attention, ran in circles a lot, his speech was lots of burbling, sounds in his throat and squeals with a few words, mostly numbers. He did have a few ways of communicating, like when he was done with his food he would bang his wrist on the table. He wouldn't smile in response to people but would smile or laugh if something made him happy, had almost no facial expressions. He'd also regressed from about 16 months when he had begun to use a few words.

He was 5 in October. He's at mainstream school, ahead in phonics, doing well in maths, he has started asking questions!! Not just "where we going?" but when I said something about when he was 1 he asked if he could go back to 1! He still uses echolalic speech but also has plenty of his own, he's very sociable and has been starting to say hello to other children and run around with them. I was crying the other day and he came and patted my back and said I'd feel better if I had a rest!

At 2 I could never have imagined he would develop so much. But then there are children who sound similar to him who haven't/haven't yet so it's not really a good way to predict. I did read somewhere back then that if there is autism in the family the child is more likely to be similar to them than other children with autism. As a person ds2 is more like the rest of us than he is like "autism" despite the fact if I described everything about him he's obviously autistic! Echolalia is a good predictor of speech. I found it fascinating when ds moved on from straight up echolalia to cobbled together echolalia to meet his speech needs (easy to tell phrases apart especially when they come with the pitch and accent of the original speaker!!)

You're in the hardest part. I first posted on here when I had concerns about ds2 and I couldn't believe how I could ever be okay with his autism or how much it has changed our lives and plans, but I am..... well, if I don't think too hard about it! He's adorable so that helps!

[RocketBaba]

At my dds understanding was my big concern (assessed as receptive language of 12m at 2yrs 9m) but she bloomed. Struggles a little with stories or longer conversation flow but can pass as age appropriate at 4 informally.

She also bit herself but stopped. She's rigid but switchable now.

Though recently diagnosed I now query it.... she's come on tons

[Heytheredelilah1987]

Thanks anti quitty - my son has a temper for sure so perhaps that's just the fact he's like his dad haha as opposed to the autism ;) interesting to hear how well your son came on. That's fabulous!

Rocket - if you think the diagnosis is wrong perhaps ask for a repeat? Xx

[Snowflake65]

At 2

• non-verbal (did have language at 1, but regressed)
  
• didn't show emotion other than fear
  
• indifferent to people
  
• very repetitive behaviours
  
• no interest in toys but fascination with all things electric
  
• didn't know colours, numbers, letters
  
• didn't like certain sounds, lights, labels in clothes, smells, textures and had very limited diet
  

At 18

• talks LOADS AND LOADS, echolalia, monotone voice
  
• limited range of emotions / understanding of others - can tell if someone is happy but often mistakes other emotions for anger and reacts disproportionately
  
• doesn't understand inter-personal relationships very well, but loves his family, can pick up and drop friends but gets upset if they fall out with him, doesn't understand motivations / easily manipulated / vulnerable
  
• very routine / repetitive - sitting with him while he is replaying the car chase scenes in Dukes of Hazard, over and over and over again!
  
• still obsessed with electrical stuff (studying it at College)
  
• struggles academically but is very clever at fixing things
  
• still doesn't like sudden, unexpected noises, labels have to be removed from clothes but eats anything!

[Heytheredelilah1987]

Thanks snowflakes- it's great to get some inisght into someone in their late teens too. He sounds like a lovely young man :)

[Snowflake65]

Thank you delilah - he is.

It's really scary when they are so little and you can't imagine how life will pan out for them.

Based on how he was at 2, we were imagining a very different outcome for him, but with the right support he has overcome a lot of obstacles.

He is still anxious and life ruled by his ASD but to the outside world there appears to be very little wrong with him.

A lot of this is down to giving him strategies to cope, but also because he chooses what to expose himself to - he doesn't go out into town drinking like his peers do as he couldn't cope with pubs / clubs etc, and would much rather stay in his room surrounded by his stuff and do online gaming.

He never did the teenager thing of hanging round the park smoking / going into town shopping etc and he has not had a girlfriend, but that is what makes him happy and he doesn't feel that he is missing out.

Even his career choice fits with what he feels he can safely cope with.

[Heytheredelilah1987]

He sounds happy with how his life is and that's all that I want for my son. I have to keep remembering his needs are going to be different from mine and at the moment socialising is not important to him and actually quite distressing so I'm trying to work with him. He's so young though it can be tough!

[Heytheredelilah1987]

(Tough as in I'm unsure what exactly he needs or wants ! )

[Pennina]

Hi, I remember asking that question when my daughter was 3. She has HF autism and is now 13. She has grown up to be a most charming young lady. She is in year eight of a mainstream secondary school with 15 to 20 hours support per week. She made a lovely group of friends at school and is very happy. She's doing okay not brilliantly - she's hanging on in there. I suspect she would do better in smaller groups with the work at a slower pace but that is just not really possible. We will shortly get the option to drop non-key subjects and she will have a shorter timetable and more time in the SSU. She can be quite hormonal, oppositional and very disorganised and untidy. If she is uncomfortable socially she just gets a book out or gets her iPod out and withdraws. Food has always been a problem and continues to be, she only eats a very limited range which isnt that healthy. She has done so well and if I knew then what I knew now when she was diagnosed I would've certainly saved myself a lot of heartbreak and worry

[Heytheredelilah1987]

Thanks you Penina. Your daughter sounds like a Typical teen in many ways. These accounts are always so promising.

[Ruby1985]

My son was diagnosed with autism when he was four and a half. At the time I was very upset and down and had just given birth to my second son. Two years on he has made incredible progress when I had initially thought he wouldn't be able to probably talk properly. He's in a mainstream school with no ehc plan, school are meeting his needs with small group work etc. He is top of class in maths and reading he still struggles slightly with writing but has come on leaps and bounds this year and his teacher always tells him he's one of the popular ones in class and everyone always wants to be his partner. After his diagnosis I feel we as a family understood him so much more, I started him in private social skills groups run by SALT, taking him out more etc and even his teacher always says it's not just about academics but she can see that we do lots of outings which he learns lots from too so this is really important too. If anyone had told me back then that he was gonna improve this much I wouldn't have believed them. At your sons age he had two words 'mama' and 'dad' that's it, he was also a very easy child to look after and I never and still don't have any big issues with him. The future may turn out better than u think!

[laughingGnomette]

Thank you Ruby! I am in exactly the same position as you were, DS 4 and a half, I also have a young baby and received his diagnosis of ASD today. I'm feeling a bit overwhelmed and emotional but your post is very helpful .

[Msqueen33]

At two some language, jumped everywhere, hugely inflexible, hated noise, had huge meltdowns, wouldn't walk, would run off, climbed on everything and jumped off, chewed stuff, angry, was unpredictable around children, in her own world.

She's six now. At mainstream school. Age appropriate language. Reads, writes (although doesn't like it), has lots of friends, very sociable, funny, kind, polite, she still has a temper which is part of her personality but she has changed so much. Her younger sister is four and has severe asd but her older sister gives me hope. I never imagined she'd come so far.

[Msqueen33]

Both have asd and my six year old also has ADHD alongside her autism plus sensory issues.

[Heytheredelilah1987]

Thanks ms queen that's so promising to read. You're daughter has come so far!