ASD (excluding Aspergers) DC development understanding please

[Harmos]

Hi all,

Some background, a bit about my DS which from what I've read from others on here, some will be able to relate to.

DS currently 3yr3mths and only interacts by hand pulling to meet his needs. No speech (never spoke), poor receptive language also, no gestures (pointing/waving, although we've taught him pointing and he does close-proximity pointing at what he wants without looking back at us, doesn't point at a plane in the sky though), no shared/joint attention (although he will bring us a toy to be switched on), walks tiptoes, loves spinning looking at corner of eye, loves jumping on his trampoline, has repetitive play (spins wheels, picks up magnetic number (or pasta) and drop them and again, as if they are hot, music toy (he will go through the music selection to listen to the one he likes again and again).... so we know there are some sensory issues to address (or for him to grow out of?). But he does play properly with his other toys, like lego, stackers, does play ball throwing it back at us.

Sleeps well at night even with a nap during the day, not fussed with food (doesn't like fruits apart from banana in his porridge), no motor issues (runs, walks, climbs stairs 1step/foot), plays educative games on tablet well for his age I think using his index finger, does wooden puzzles, eats by himself, is potty trained for wee but not yet No2, understand simple instructions (sit, stand, come, up, give, no), gives high5, taught him to give hug, kiss which he gives. Eye contact & Response to name which were virtually nil when he was 2-3yrs have improved since he turned 3yrs in Feb, he will now look back when his name is called more often even when busy, but its still not consistent. He is affectionate to our 7months old DD so just out of the blue he will come and give her a kiss on the head. He is fine with cuddles, picking up (which he will put his arms out), will give his hand out for me to hold when I do the same gesture, no issues with routine rigidness, does get angry and cry when he doesn't get his way but a small cuddle resolves that, he has never had meltdowns which lasts for long time, he is sometimes very active and runs up and down the room however yesterday he amazed me in the garden by holding my hand throughout our walk for a good 10minutes, he just didn't run off.

We've taken him off gluten and dairy in Feb and I can say there is definitely a behaviour difference, his poo is normal whereas before it was either constipated or loose. However he has gas and we are starting him on probiotics hopefully that will help. He has omega3, vitamins and B12 also.

However he is developmentally delayed and socially disconnected, which puts him on the spectrum. He has recently been grunting a lot for attention.

Back to the subject, I am seeking your help to understand how my DS "could" develop (I know ever case is different). Reading others' posts, some have seen a sudden positive change in their DC's behaviour when language came, becoming social from previous classic autism behaviour. DCs become more lively and connected with normal executive function (even questioning whether their DC has ASD or just a case of late bloomer).

Some DCs have stayed passive although have become verbal they don't ask questions (sort of half foot in this world and the other in their own ASD world). Executive function not fully normal.

Some DCs have remained non-verbal but with good receptive language understanding and able to use technology to communicate well. This includes good executive function. Some DCs on the severe end remain non-verbal with no executive function and very affected by sensory input.

Also I'm reading that other issues can have symptoms like ASD ie the disconnected behaviour? Any experts can confirm please, does this include language delay, ADHD, dyspraxia, development delay?

So I would be very grateful to hear your story please, please include what age your DC was diagnosed with ASD, what age did he/she improve and over what period, and how they are today.

Many thanks,

Harmos (dad to DS) and family

The term Asperger's isn't used anymore, but is there a reason you don't want the experiences of parents whose children did/would have that diagnosis? My DS is at that "end of the spectrum" but it doesn't really work like that. This link helps explain:

neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

@NaturalCleaningParticles

Hi thanks for your reply so quick. Only excluding it for the reason that my DS is clearly no at that end of the spectrum otherwise he would have developed good language but have a "little professor" type rigid behaviour.
Unless a DC can still be diagnosed with AS (I know it's not in the DSM5 anymore but AS are the clever high functioning ones?) even with late language development, which is not my understanding?
Thanks friend.

Hi again,
Have a look at the link I sent if you haven't had a chance to yet. ASD isn't a spectrum with severely disabled people at one end and little professor types at the other. Even having what would have been called Aspergers doesn't mean you wouldn't experience language difficulties. My DS has had speech therapy for example (albeit for talking too fast), and struggles with some academic work.

Harmos I suggest you read a book called Uniquely Human. It is an amazing book written by someone who has worked with autistic people and their families for decades. There are plenty of examples in it of how children with specific difficulties have progressed and what helped them.

Another good book is The reason I jump. Written by a non-verbal autistic teenager it gives a good insight into how his mind works.

You seem to have a very binary view of autism and some of the information you have quoted is quite dated now - the little professor, for example.

I should be clear though. Uniquely Human isn’t about therapy or making the child appear ‘normal’. Often it is just about a change in others behaviour, greater understanding or acceptance and better understanding sensory needs and challenges.

@openupmyeagereyes

If you can re-read what info I am after please that would be appreciated. I am not after books to read to understand autistics, or others to be critical in the words I've used. We have already bought enough therapy books and there are enough pages that we (and many other parents can relate to) have to go through to deliver home therapy in this time when Covid19 is preventing access to services.

Quite simply, just want to know how others' DC with ASD have progressed.

I’m sorry, I didn’t mean to sound overly critical. I know that it’s scary when you first start down this journey. However, you said you have already read lots of accounts of people’s experiences and you have categorised them yourself on your own OP. The reality is, there’s no way to predict how your child will develop, however many people post here.

Covid or not, unless you are willing to pay for it yourself there often isn’t loads of therapy to access. Most therapy is done by parents in their own homes anyway.

Use something like More than words to help communication. Use intensive interaction to develop strengths and improve weaknesses. Your child, autistic or not, will have his own unique journey, as will you.

That isn’t what you asked for, no, because my child is what you would term ‘higher functioning. Even so, that’s not without issues and even for us the future is unclear.

@openupmyeagereyes

Hopeful old discussion from here:
www.mumsnet.com/Talk/special_needs/922505-Have-you-ever-had-a-wrong-diagnosis-of-autism-for from mumsnet:

Another old blog below seem to infer that some boys develop later:
littlechildren.wordpress.com/2009/07/09/your-son-might-be-autistic-or-hes-just-a-boy/

Got more than words already and applying it. Remaining hopeful that it's just a phase, but seeking others' experience in that road to remaining hopeful.

Hi Harmos,

There is some excellent advice here already. It helps to look at autism as a sphere, split it into the triad of impairments. If I was asked to shade the spheres according to my asd children, they would look very different. One of my boys has very low IQ, a severe receptive speech and language disorder and very poor social skills. My other son is academically far more able, but still has very poor social skills. They both need an awful lot of support in the same areas but in different ways.

In answer to your question about development, as has been said there is no certain way of knowing. My eldest had very few words by 3½, didn't point or draw our attention to share, didn't say mumma/dadda, was socially withdrawn from others, had extreme sensory behaviours. He liked to be held and cuddled, had stimming behaviours, couldn't follow any instructions. He went to a speech and language nursery, to a tiny mainstream primary with asd unit and then to special school.

His speech continued to develop, school helped him develop social skills and awareness, and I can tell you the boy I had at 2 years of age is far from the young man he has become. He won't live independantly BUT he can now do things on his own, has a little part time job and has learnt socially the basics of how to conduct himself.

Whereas my other son, had excellent (but not too advanced) speech and language, engaged with us but I just felt something was off. He wasn't very sociable and this became more and more evident as he started school. I was absolutely correct in my view he too had asd, but was the opposite to my eldest, where he seemed to regress and his difficulties became more obvious the older he became.

What professional input are you getting? Unfortunately, services are stretched and the SEN world is about fighting for your child. You can do a lot at home and I would recommend looking at the National Autistic Society website as a starting point.

Yes there can be other conditions that can mimic asd traits, speech and language delay can look like it, but you have to look at the whole picture.

It isn't easy to come to terms with the fact your child may be different from the one you were expecting to raise. I thought second time around it wouldn't be as bad, I knew what I was dealing with but I still cried when I got the diagnosis. Any parent on here with a child/children with asd will probably tell you the same thing. As well as coming to terms with helping your child, you have to come to terms with your own loss of what you were expecting.

I hope that helps with what you are asking.

@PaolaNeri

Dear friend, thank you for your time writing here and sharing your story which is one of strength to keep going no matter what, and a kind lady once put it in perspective to me recently that "there is space on this earth for all of us no matter how different we are".

We are getting portage, but we are doing a lot ourselves, upto a point when maybe we need to accept that our DS will not improve to our expectation.

Yes a lot of time in pain, crying in fetal position. So wish it is just both expressive & receptive language delay. My DS just did 3 different puzzles in 5 minutes one after the other (numbers, fruits and shapes). He stood on the boards and the bits were all over, so I asked him to do tidy up. Only time will tell.

Thank you again and wish you a great weekend :-)

Hi @Harmos I can share my sons journey with you. My son had the classic signs of autism had little words, walked on top toes, didn’t point, no shared attention, was hyper active, made no eye contact, had aversion to textures, hated wearing jackets, would run away from us at any given point , had no sense of danger the list goes on. Was always at least a year/2 behind his peers as the doctors and nursery told us. He’s is nearly 4 now and he is a different child. We had our autism assessment In April but was cancelled due to covid 19. He now speaks although his language isn’t clear. He points, has shared attention and is able to tell us what he wants and doesn’t want. The real change came around the last 8 weeks to be honest. It doesn’t mean he is not on the spectrum but he has defiantly made a lot of progress which we want didn’t expect. Personally I did a few things which I’m not sure if it helped or not. We did a lot of floor time play, focus a lot on trying to teach him joint attention and had the hanen books which were amazing. We also did the gaps diet. It would be interesting to see what the doctors think now but like I said I still believe he may be on the spectrum as he’s developmental had been different to that of my daughter who is not.

You sound very wise Harmos , that will carry you through whatever journey is intended for you. Acceptance is difficult, there is no time limit, you are grieving and this stirs a multitude of emotions.

Don't be afraid to be what I call the "PBP" Parent. It stand for "Pushy but Polite", and sometimes just plain "Pushy" and sometimes "damn assertive". Find out what local support/groups are in your area, look at your "Local Offer" for your borough. This is like a huge SEN directory that lists everything to support parents/carers for education/health and social support. Your Portage support should be able to help you with these, if they have not already done so.

Take good care, I wish you all the best.

@paolaneri
Thank you for the info. Our portage s&l therapist is very caring and we have weekly call with her and she guides us with therapy, even now during covid. She has also supported us to gain a place in a special s&l nursery attached to a mainstream school starting this September.

@Unluckyinlove2
This is great news and I am very pleased friend. From what Ive been reading its quite common with boys (albeit not all delayed boys), see the 2nd link of my earlier post which is a blog from a psychologist. I wish I can also return to this post with a positive outcome in the future. Wish you well and hope your DS continue to make good progress whether he has a label or not.

@Unluckyinlove2
Dare I say a name change from "unluckyinlove2" to "Blessedwithlove1" deserved for efforts youve put in your DS to date.

Have you looked at doing ABA? My DS started an ABA programme at 3.7, first doing one to one and then in the pre-school that they ran. It followed the VB Mapp scheme, which is basically a modern way of doing ABA focusing on communication skills. It really did work wonders for him and others in the programme too.
He did have speech at your child’s age but it was very behind, at five his speech is now in the normal range (although low average). He is now very well behaved, having gone from being extremely hard to control and he enjoys playing with other kids and asks for and wants play dates, although again does have social deficits that his peers don’t pick up on yet. I do expect things will get more tricky when they start to notice more.
ABA can be great at teaching children ‘how to learn’ - so joint attention, and eventually responding purely to social praise.
It’s a really difficult time but please do keep in mind that there is a lot that you can do, and now really is a great time to be doing it when your child is still so young.

Any updates @Harmos my little one is very similar to your child two years ago. Wouldnlove to hear how they are getting on and steps you took

Hi sorry for late response. My son is now 5 and a half years, and still non-verbal and we got his diagnosis last month. He still has loads of repetitive play, finger mannerism (falls in same pot of hand flapping). While has has made progress over the years, so he goes to toilet himself and does his business, eats himself, he comes when we call him, smile back when we smile at him, but he still likes to jump and walks on tip toes. As has been said no 2 child with ASD are the same, some makes progress now some later some never. Truth be told there is no point in comparing and hoping, just live day to day and help where you can, and don't worry about it, what's that going to help with. All the best!