Struggling to accept DS 3.5 is likely autistic

[okroger]

Posting here as it’s quiet on the neurodiverse page.

I’ve posted here before but I guess I’m just looking for further reassurance (although still realistic).

I have two older DC 9 and 10 with no ND but my third is looking very likely ASD. He’s a lovely little happy boy but I just can’t keep thinking how different our life might have been if we’d stopped at two DC, especially as the older two are a lot easier now (probabaly in that sweet spot pre teen!) in all family situations I keep thinking about how it would be easier now. It’s like an obsession comparing our lives to what could have been.

I know that sounds awful and I don’t regret having a third (he was very much planned).
I guess our lives are just looking different to what we expected. I also feel concerned it could or already is effecting our other DC.

His biggest most noticeable problem is delayed speech. He finds ways to communicate but speaks in phrases (Gestalt language professor). He’s got many of them and some are very clear but he engages in zero conversation, although he’ll day related phrases to some of what we say.

He struggles with instructions unless they’re routine.

He starts school in sept 2027 which I’m petrified about. I know a lot could change in a year but possibly not enough for mainstream.

He’s having private speech therapy which I believe is helping. He shows no signs of potty training at all. HV said at 3 he was globally delayed.

If anyone else has been in this situation can you help me see what the future could be like? I know of course all journeys are different.

Also aware I sound a bit desperate! (Which I am).

That’s a very narrow minded way of looking at things! You SHOULD absolutely grieve for what you thought would be, otherwise how else will you get over it?

Agree! You could say that about anything uncontrollable in life!

Those all sound like language and social communication delay/disorder, apart from the not sitting still but its pretty common for a 3.5 year old not to sit still. Nursery, two speech therapists and three doctors all thought my 3 year old was autistic but he wasn't. Has your son had an ADOS assessment?

Almost all of this could have been written about my son. They sound so similar. He also has delayed speech and talks in phrases sometimes but will not make conversation, only follows routine instructions, no signs of being ready to potty train. He never points and has only recently started waving but only rarely and on his terms. We also suspect autism but I’m not 100% sure because he doesn’t really have sensory issues and does not have meltdowns. He has tantrums sometimes but can easily be distracted. Unfortunately I can’t really tell you what the future may hold as my son is slightly younger than your little boy (he’s recently turned 3). He will be starting school nursery in September and has an IDP (Welsh version of EHCP) that outlined all his needs and the support he needs. School is aware he is not potty trained and are fine with it because they understand that he just isn’t ready yet, but we will be giving potty training a go before he starts just incase he surprises us. At the moment the hope is that he will be able to attend mainstream school with support.

@Strawberrycheesecake7 this does sound so similar. My DS doesn’t really have any sensory issues either. Has yours had any speech therapy? Hopefully nursery will help him, it has for my DS to progress and he’s settled in well. I’m also going to try potty training this summer but doubtful.

Lets keep each other updated x

That’s interesting, I have wondered this too. I really hope so. I do sometimes think if he could talk “normally” he’d not be much different!

Thanks so much for your message. Will take a look at those links and drop you a message x

Forgot to say we’re still awaiting an assessment

Thanks everyone for all the messages. Trying to reply to them all but losing track. Really appreciate them. So glad I posted x

Have you read Emily Perl Kingsley’s poem “welcome to Holland”

The Flight to Holland

You spend months planning a magnificent trip.
The destination is Italy.
You buy the guidebooks.
You learn the phrases.
"Colosseum," "Gondola," "Espresso."
The anticipation is breathtaking.
The day arrives.
You board the plane.
The engines roar.
Hours pass in eager waiting.

You board the plane.
The engines roar.
Hours pass in eager waiting.
Then, the intercom crackles.
The stewardess speaks.
"Welcome to Holland," she says.
"Holland?" you gasp.
"I signed up for Italy!"
"I am supposed to be in Italy."
But there has been a change in the flight plan.
They have landed.
You must get off the plane.
It is crucial to understand:
They did not take you to a terrible place.
It is not filthy, poor, or broken.
It is simply a different place.
So, you must go out and buy new guidebooks.
You must learn a whole new language.
And you will meet a whole new group of people you never would have met.
It is just a slower place than Italy.
Less flashy than Italy.
But after you have been there a while and you catch your breath,
You look around.
You begin to notice Holland has windmills.
Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy.
They are all bragging about what a wonderful time they had there.
And for the rest of your life, you will say:
"Yes, that is where I was supposed to go. That is what I had planned."
The pain of that lost dream will never, ever go away.
Because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy,
You may never be free to enjoy the very special,
The very lovely things...
About Holland.

He’s had a few speech therapy sessions and they have helped a bit by teaching him a few more phrases. But he still will not answer questions or make any conversation. I very much doubt I will have any success with potty training him any time soon. I just want to try because I feel guilty that the teacher/TAs will have to change him, even though they do seem to be understanding about it.

At your son's age (actually maybe a bit older, almost 4), mine was non verbal, zero interest in other kids, nursery had him scoring 8-20 months on the EYFS progress thingy across every part apart from gross motor (20-36 months there), zero sign of toilet training readiness. He was diagnosed autistic at 2 years old, we were suspicious from 9 months old. Went to hell and back to try and get him in a specialist school (hes one of the oldest in the year so started school at pretty much 5). He ended up at a mainstream primary whilst we were still going through the tribunal process to have a specialist achool named on his EHCP which he had from the age of 3.

He is now 8. Very much verbal (also a Gestalt language processor), very able to communicate thoughts, feelings, needs, and working with a private SALT on things like social skills, reciprocal conversation etc. Learning to read i think really accelerated his speech, he went from non verbal to full sentences in about 6 months. Hes achieving greater depth in all areas at school and has the classic mathematical autistic brain.

His social skills are also flourishing, he attends a number of clubs outside of school including cubs (full participation, camps and everything) and 2 different team sports.

He is an absolute dream of a child. He is very obviously autistic, he couldn't mask to save his life. But he is also kind, gentle, polite, funny, confident, and most importantly of all, such a happy kid. Hes never been violent or destructive, is great at knowing what he needs to regulate himself (better than a lot of adults tbh!) and is a sensory seeker rather than sensory avoidant.

With the right support (early intervention is so important, it sounds like you're all over that) who knows what your son may achieve. Its hard to adjust your wishes, hopes and dreams for your child, and to accept that the future may look different to the one you had originally planned. But in our experience, progress and time have definitely not been linear.

I heard this poem recently and I love it 🥰

I second applying for an ehcp as soon as possible. If nothing else, it gives you more options when the time comes.

Mainstream isn't the be all and end all. My children were utterly destroyed by going to a perfectly nice mainstream primary that couldn't meet their needs. One has been flourishing in a special school and I have every confidence that he will be able to take some gcse's. I dread to think what would have happened without the special school placement.

No problem xx

@AutismMum2017 could I ask how you knew at 10 months? X

this is another wonderful post.
Can I ask:

• what interventions did you find the most helpful and how often did you have them?
• (if you don't mind asking) when you say he is still "obviously autistic" could I ask in what sense?

As soon as he could walk, he was hand flapping, spinning, walking on tip toes, inappropriate laughter, lining things up etc - there were a lot of the classic traits including losing sounds and I just had a gut feeling so I followed it x

Sorry to jump in on another comment , but I also ‘knew’ when my DS was a baby/young toddler although everyone else thought I was bonkers. My DS was a terrible sleeper , he would honestly clusterfeed all night until 5am. He needed movement to sleep , I remember pushing him in a pram in pouring rain around the garden so he could nap. He detested his car seat and would go mad when put in it. He was extremely restless - the other babies/toddlers at library story time could just sit on their parents lap but my DS would constantly be shrieking and squirming in a way that the other kids weren’t. Screamed in the bath. He was just ‘difficult’ and I felt like such a failure that everything was so hard. Couldn’t go to mum/baby coffee mornings where all the babies just slept in their pram or lay there looking around as my DS just would go bananas.

Having another baby who is now a toddler and seems neurotypical was very validating in showing me how much easier babyhood can be. It felt more like the experience my peers had with their children. I feel like I could do a long haul flight with my second child if I had to whereas I had to brace myself to do a supermarket food shop with DS.

I dont know if I can say whats been "most helpful" because I feel everything has contributed, but...

Occupational therapy - very helpful in terms of supporting school to manage the environment to get the best out of him - where he sits, minimising distraction, mivement breaks etc. We are very fortunate that the school is very ND-aware and find that a lot of these strategies help lots of kids so they are a natural part of things rather than standing out as specific to our child.

SALT - we managed to get a very neuroaffirming SALT who is autistic with ADHD herself. Again, school have been great at being open to receiving training from her in terms of Gestalt language processing.

EHCP - he has 1:1 adult support specified, which really helps in terms of them delivering his OT and SALT interventions.

We are also fortunate that we dont have any other children, so we have the time, energy and finances to be able to afford things like private SALT (NHS discharged him as soon as he could speak clearly, despite this being essentially non-functional) and EdPsych and 1:1 swimming and music lessons etc. We also dont have to consider the needs of any other children, which makes life much easier.

In terms of it being obvious, you can just tell. He is uninhibited and lives his life for the full sensory experience. E.g. he cannot just... walk down the street. There's running, jumping, hopping, spinning, touching things etc. He doesnt respond in the way youd expect when someone interacts with him. His vocabulary and manner of speaking is not that of an 8 year old, it consists of mostly learned phrases and reciting previous interactions which are often out of context and usually on a loop. He stims openly, usually hand flapping when hes happy or excited. Life isnt without its challenges, but in the grand scheme of things these are relatively minor. We were at an attraction at the weekend and he got most upset that people werent following the rules on a piece of equipment. We had to explain that not everyone will follow the rules, and that he just needs to worry about himself, if hes following them its ok.

He is the most beautiful child and he steals the heart of everyone who meets him.

Thank you so much. It's so wonderful to read all these posts. I feel everyone online about parenting autistic children is so negative and it's just so lovely to read about parents really valuing and loving their children because of their autistic traits and not just despite them 🥰🥰

I think its only natural that you will see the more negative side online, as people are actively seeking support and guidance to navigate challenging situations.

I wouldnt change my child for the world, but I would change the world for him.

Hi OP. My son was diagnosed at 3. Had less than 10 words (pointed to his siblings/guided your hand.) What I remember most of that time is joining support groups and being shocked by the negativity of other parents and carers. One told me when her son was diagnosed she went to bed for three days. I couldn’t understand that. I promised myself I would try to take him out of his world and into ours. It’s been successful. This has also shaped my life and career. You are a Warrior Mum. You are going to pick this up and run with it xx

How is your son now. My DC has just been diagnosed with Autism. Very little still x

There was an article in the press today about how a lot of other conditions are now being diagnosed as autism and just how different the challenges can be for people at different ends of the spectrum. My son had zero words at three but he didn't have autism, no-one ever talks about the many different reasons for speech and language delay / disorder.