Autism diagnoses help

[Autismhelp0]

Long time lurker, first time poster.

I've suspected since my DS was around 8months that he wasn't developing "normally" aside from no pointing/waving/copying/words etc, he very suddenly stopped eating anything other than 6month old baby pouches and porridge despite eating anything and everything before this. We have been going back and forth with health visitors, doctors, speech and language etc. We finally had our pediatrician appointment - and she has said he is on the spectrum for Autism.

He is now 3 years old. Doesn't say mummy and daddy when he needs us. Screams and cries I would say 90 percent of everyday. Any day out we go on, which are only things we think interest him, such as the farm etc. Its unbearable screaming the whole time.
He doesn't care at all if anyone else is upset or hurt, he finds it funny.
He hits us all the time, out of frustration and also not out of frustration aswell.
He has only really started repeating words, but I'm not entirely sure if he understands what is being said. He doesn't follow any instruction, to get shoes, bottle or toys. Despite knowing the words for these things. He still doesn't point or look up to the sky and struggles to follow a point. He doesn't seem to play with anything or anyone. He doesn't understand it, he lines all his toys up, if you move one, he will come back and put it in the previous position.

There are many many other behaviours and things that are going on, but I'd be going on forever. The point is, I'd kind of convinced myself it was developmental delay from covid and also, his sibling is quite a bit older than him, so hasn't had to really learn to share has he has no interest In my DS toys.

I think im looking for advice really, on how I can figure out his triggers, and help him to develop or just even be happy. I'm reluctant to tell people about his diagnosis. I don't really know why? I'm not ashamed of it. It's really hit me hard, I've got all the mum guilt going on that I've not been the parent he needs. And I really want to be. He has recently started nursery, they haven't mentioned any problems there. But I think I should ask them.

Has anyone had a child along the lines of what I've described and what did you do to make sure you was exactly what they needed and was also diagnosed with ASD?

Sorry it's a long post!

My son is similar - he has autism and also global development delay. A lot of what you describe is exactly how my son behaves. My son is 6 now and his communication has improved but he's still hard to understand and gets frustrated he can't make his needs known so lots of screaming, hitting, damaging things.

Don't feel guilty it's definitely a learning curve and I have days where I definitely don't get it right. I do have to fight my instincts because I want to comfort him when he's upset etc but I am trying to teach myself that this is more about helping my feelings than his so I have to stand back and let him come round in his own time.

My husband definitely struggles with the diagnosis more than I do - he doesn't like telling people. He's not ashamed but he says talking about it makes it real. He sometimes needs reminding to enjoy and work with the child he does have rather than the one he expected to have but he's getting better with it all.

In terms of triggers we kind of learnt as we went along, it's very much trial and error but sometimes he'll still react to something completely unexpected. We have to be careful keep everything very simple and follow his lead - he gets anxious very quickly if he feels under pressure. He's just happy in his own way sitting and lining his toys up or going outside to just run or roll down hills.

I would definitely speak to his nursery so they can be on the look out for things - this will definitely help with evidence to start looking at things like EHCP if you haven't already and also when you start looking at school and what support he may need there. My son's nursery, and now his school have been fantastically supportive and its made a huge difference.

Ah OP, your son sounds just like mine at that age. Jesus, I still remember the meltdowns if someone accidentally moved a car out of his line up. When he got to five we actually made it into a game as he was so fascinating. He would line up 40 cars, leave the room, we would take out two and push them all back together then call him back in. Instantly he would know which two were missing. He didn't talk til he was four, and then it was very very hard to understand because he was using words such as hydrolic and other obscure things. He couldn't speak but we had flash cards that had a picture on the front and a word on the back, we'd turn all the cards word up and ask him, "where's carrot?" He picked the right one every time.

it's great he's at nursery now, they were fantastic with our son. I had to send him at two and scrimp on other things as I mentally needed that break. He never slept either, from newborn, and I mean never. He's 9 now and is prescribed melatonin which helps a lot but I feel he never goes into a fully deep sleep.
we were worried about empathy a lot, but he honestly has buckets of it now he's older.

have SALT given you activities to do at home? We found the game greedy gorilla really good, as we would just hold up the cards and say 'rice or salmon?', He'd then either point or try and say the word and could post it into the gorillas mouth so he burped.

is he good going to nursery? My son wasn't so I took pictures of our house, car, me, dh and laminated them so nursery could show him mum, car, home etc. Sand timers worked well too for transitions. We also made him an emotions keyring that he could point to with simple faces 'happy, sad, tired, hungry, worried' etc that he could point to. We also made a visual timetable for him with a letterbox underneath. The activities were stuck on with velcro, then we'd use sand timers so he knew 'outside time' was nearly over, then he could take that card off his timetable and post it in the box so he visually can see that's over.

changes in routine were a huge trigger for him, and still are, if we had to drive a different route to nursery he'd go ballastic. He was also a champion bolter which scared us so much. We used the buggy for a long time, then a backpack with reigns, then a backpack with books in to slow him down. It's very difficult as he can still do this occasionally now and he is much to big for me to pick up and dh struggles.
noise cancelling headphones can help if he has to go somewhere busy, or even at home if he can tolerate them. Also a safe space he can go to, we used a pop up tent with blankets and pillows inside, now he will go to his bedroom for a reset.
I remember how hard those first years were as you have to find your own way and it's so hard and draining. I used to cry most nights just wishing that I could make him happy.
you're doing a fantastic job navigating all this

Thank you @Fandangofran and @Haveatakeaway both really helpful posts.

Nursery say he is settling in there - he spends most of his time alone though or with the adults in the room. I agree my partner also has taken it worse, I think it's just adjusting. He is our only child together & the only child we will have. I have an older child from a previous relationship so I think I knew things weren't going in a typical way much sooner than he did. And I still don't think he believed it until we got the diagnosis.

We have been given bits of information of activities, and I'm hoping to work with the nursery closely to make sure we're doing everything that's best for him at a home.

Can I ask, how did you deal with the meltdowns yourself? Thank you for the great tips on things we can put in place for him, such as the tent. I think he would really like that.

Also, do you think things have got easier as your children have got older?

Thanks again for all your advice, it's really nice to not feel alone.

Hi,

I would say some things have got easier as our son has got older - he communicates a lot more thanks mainly to regular SALT so he does get less frustrated I think but as he gets bigger he is stronger so when he does meltdown he's harder to handle physically for example if he decides not to walk I can't just pick him up like I used to.

He's definitely more regimented as he gets older in terms of his routines - he hates any unexpected changes and we've got to plan everything well in advance, show him pictures etc so he knows what to expect and when. We also have to stick to exactly what we've planned - no deviations or surprises - which is sometimes easier said than done. He has visual timetables etc at school to see what's happening next but he doesn't really seem to respond to these as well at home.

In terms of meltdowns my son's meltdowns often involve self harm and that's hard to see. Originally we used to intervene, try to talk him round, distract him or simply reassure him however we have learnt that although that makes us feel better - it's not what he needs. He can't cope with being spoken to when he's in meltdown he doesn't hear what we're saying and just screams so any intervention just escalates the situation. Now we just tend to make sure he's safe and observe him from a distance until he comes round in his own time. If he's in his buggy we can usually remove him from the situation to somewhere quieter. He usually seems to have very little memory of what has happened.

In the main we try to avoid meltdowns in the first place - he has some triggers we try to avoid like busy places, certain noises, sensory overload in general, or queues (he has no patience and can't cope with waiting for anything)

We take ear defenders and his acceptable snacks out with us everywhere - also our son is a bit older but he has a tablet we give him when he starts to become overwhelmed - he rewinds it over and over to watch the same 15 second section repeatedly. His psychologist said this was helping him to focus on something and feel in control of something which would help him regulate his emotions - sometimes it gets thrown but often it works.

We also have a tent, blankets and spaces like behind the sofa where he can take himself off to hide and be alone if he's starting to get overwhelmed. He'll quite often sit with a blanket on his head. It feels sad to me but he is happy and that's the main.

A major problem for us is that our son wants everything on his own terms - he just doesn't understand that other people have needs and wishes. We've had some success with timers and "first and next" which were suggested by his psychologist and he also uses these at school quite sucessfully
So we set a timer and say "first we need to..." (do boring parent led activity) until the bell "next we'll do....." (something he finds enjoyable). We started the timer at about 20 seconds and built up gradually - It's worked fairly well and he now tries to say "first, next" when he wants to ask to do something. Again our son is a bit older but maybe some things to consider as yours gets older.

Ultimately though we found its trial and error and different things seem to work for different people. You are not alone and you will find your way through - just like we did.

Some things have definitely got easier, but like pp I physically can't restrain or carry my son anymore which is scary. When he was young sometimes a nice tight hug could help, but sometimes defiantly not. It might be worth looking into safe restraints of he's at risk of hurting himself (my son used to bang his head On the skirting boards etc), this is useful as I've had a few headbutts unintentionally from him. When I could see he was escalating and he was a little older id get him to lie on the floor and put the sofa cushions on his back, the pressure seemed to help, but again not always. He also couldn't remember what he'd done when I'm full meltdown.

After a meltdown now it takes a long time for him to talk at all again, but sometimes we can gently find the cause after a few hours so we can avoid it again. Like at the fair, now I'm kicking myself about why I thought he was ready for that, but he was so excited. The lights, smells, crowds, noise is overwhelming for a lot of people anyway. He managed to eventually explain that in the supermarket he can hear about three different conversations at once, so the fair was pretty excruciating for him.

he still has obsessions and will talk and talk about them, which can take up an extraordinary amount of time but I make sure I give him at least half an hour a day of one On one talking about his interests, even if it's just the same thing he repeats everyday, film directors, release dates of films, lists of top grossing films. I want him to know that I'm interested. It doesn't stop him saying the same things throughout the day but he understands a bit better now that I can't always stop everything to listen fully and that he still gets his time to speak alone without his younger siblings. The conversation is very much one sided though and he doesn't really understand having a conversation means two people talking, and if it's a subject he's not interested in, he can be quite blunt and just say 'this conversation is wasting my time. Sorry if that's rude though' he doesn't trust his own judgements on whether what he says is rude or not bless him.
I'm sorry your husband's struggling, it's a huge lifelong disability that really can shock some people, and while every parent worries about their children we have an added dimension of valid worries about their futures, relationships, self sufficiency etc.

Some things have definitely got easier, but like pp I physically can't restrain or carry my son anymore which is scary. When he was young sometimes a nice tight hug could help, but sometimes defiantly not. It might be worth looking into safe restraints of he's at risk of hurting himself (my son used to bang his head On the skirting boards etc), this is useful as I've had a few headbutts unintentionally from him. When I could see he was escalating and he was a little older id get him to lie on the floor and put the sofa cushions on his back, the pressure seemed to help, but again not always. He also couldn't remember what he'd done when I'm full meltdown.

After a meltdown now it takes a long time for him to talk at all again, but sometimes we can gently find the cause after a few hours so we can avoid it again. Like at the fair, now I'm kicking myself about why I thought he was ready for that, but he was so excited. The lights, smells, crowds, noise is overwhelming for a lot of people anyway. He managed to eventually explain that in the supermarket he can hear about three different conversations at once, so the fair was pretty excruciating for him.

he still has obsessions and will talk and talk about them, which can take up an extraordinary amount of time but I make sure I give him at least half an hour a day of one On one talking about his interests, even if it's just the same thing he repeats everyday, film directors, release dates of films, lists of top grossing films. I want him to know that I'm interested. It doesn't stop him saying the same things throughout the day but he understands a bit better now that I can't always stop everything to listen fully and that he still gets his time to speak alone without his younger siblings. The conversation is very much one sided though and he doesn't really understand having a conversation means two people talking, and if it's a subject he's not interested in, he can be quite blunt and just say 'this conversation is wasting my time. Sorry if that's rude though' he doesn't trust his own judgements on whether what he says is rude or not bless him.
I'm sorry your husband's struggling, it's a huge lifelong disability that really can shock some people, and while every parent worries about their children we have an added dimension of valid worries about their futures, relationships, self sufficiency etc.