I think my 20month old ds is profoundly autistic and beginning to realise it’s hard to find support

[Crispymandm]

Sorry if this is a little rambling I’m surviving off very little sleep.
Il start by saying I was recognising autism traits in my ds by 8 months, he paid no attention to anyone really wouldn’t respond to his name or any other tries to get his attention. Never made eye contact, seemed to hate been anywhere but home. He also would cry if other children tried to go near or play with him. He also made repetitive hand movements near his eye. Family and friends said I was been silly, and I should wait it out. At his 12 month check my health visitor flagged it and said she suspected it could be his hearing.
Ds passed his hearing test a month later, he met physical milestones like crawling and walking but began with other behaviours I found concerning. He would (and still does) rock so violently for sometimes half an hour at a time and bang his head , many times a day, he hand flaps many times a day especially when happy or excited. He doesn’t do any gestures like waving, pointing, shaking his head for no, nor does he pay any attention when I do these things. He does like some nursery rhymes (has to be the same 2) with actions and we would do these lots. He would cry if anyone apart from me or dad attempted to play/interact with him even though he has 3 siblings. Since been a small baby he was always a bad sleeper, but as he got older it was every night up with him for 2-3 hours , he also had a seizure in which the hospital just didn’t seem to believe me as he never had a fever , no tests offered just said come back if it happens again. He had not attempted to say anything still so at 16 months I finally called my HV and she agreed to have him referred, I still felt so silly at this point as family and friends said “he didn’t look autistic”. Like what??!! She warned that the referrals currently have a 2 year wait? I was shocked.
I found some charity help, and ds attends an autism playgroup once a week and are on another wait list for portage? And speech and language therapy. Ds is now 20 months and his behaviours has changed so much I’m feeling so overwhelmed. Ds never has communicated with us but has always been a relatively happy little soul, laughing and smiling but now has what I’m guessing are autistic meltdowns? He will scream so loud and almost angrily for hours through the night and there’s nothing that seems to soothe him, hugging /food drink/ tv/games , even ipad just thrown they are so scary, he will also bang his head throwing himself around, pull my hair, grab my face and bite me. They are so loud the neighbors came round. He has also started covering his ears and spinning round in circles and prefers been on his tiptoes. He seems to get very fustrated through the day and tantrums easily, I’m finding day to day life quite challenging at the moment, as he will do something dangerous ( like standing on the very edge of the couch) and if I say ah ah no, it’s like he doesn’t even hear it. lack of sleep does not seem to affect my ds either and he often has hyper spells where he will just want to run backwards and forwards, he hates been still. We play the same games over and over and make sure to speak repetitively and clearly to him , but haven’t managed to get him to speak yet. He loves his touch and feel books and spinning toys most. The only communication he will do is he gets my hand and puts it on what he would like to do , or puts my hands together so he can watch me clap. I’m so sad for him and worried for his future , I feel like I’m not doing anything right but can’t find support to tell me how to help him, my health visitor just told me I must advocate for my son and let him lead me. We don’t see friends much as ds doesn’t tolerate been around others very well.
I am saving to buy him some ear defenders and sensory lights to see if they help with meltdowns, but I doubt he will wear the ear defenders, eye hospital already thinks I’m been difficult because I cannot get him to wear his glasses. Did other autism mums / dads go through this? Did support come after diagnosis or is there any books that helped you/ your children? Did anyone else’s toddler have these traits and grow out of them?

Autistic yes, how profound can be hard to tell at this age. All my DC are Autistic, only one was majorly impacted as a toddler. I used to spend hours every night being kicked and headbutted while trying to stop him smashing himself into the walls. He never babbled but did have 4 very hard to understand words at this age. He did interact with his siblings, but some of that, a lot at times, was him hitting out at them. If he interacted with other kids it would usually end in someone getting hurt or him taking off. The world was overwhelming for him, our world got very small.

He still finds it tough and we're in our 4th of speech therapy for him, I don't think he'll ever be 100% independent but the gap between him and his peers has narrowed a lot from around 5.5. He told me recently that he wished he wasn't Autistic because of the things he can't cope with, which was heartbreaking, but also a milestone because he's beginning to verbalise a little of what he feels. Therapy he actually made very little progress in the early years. We've had lots of therapy and no other help, I say we, it's actually just me, stbxh is not helpful at all. Not in UK so can't help with what's available there.

The meltdowns are overwhelm, sound sensory at least in part, you might find 'The out of sync child useful there. You might want to kick me for saying this, I know it would have pissed me off, getting my DS to sleep more has been the biggest positive for his regulation. Even 20 minutes less than normal sleep and he struggles. Mine was years of 4am starts with him, his sister barley slept as a baby and still wakes overnight. The lack of sleep destroys you and when you're exhausted you can't help him to to co-regulate. I don't have any magic answers. Mine involved setting an alarm 15 minutes before he'd wake and patting him back to sleep as soon as he stirred. I tried what felt like an endless aray of things before that and gave up many times. FB has some good online support groups, I find it helpful talking to others in the same place, sharing ideas. I hope someone else can give you some ideas where to access local help.

In addition to a referral for an ASD assessment and SALT have you looked at an OT referral? In many areas you can self refer. Does DS take anything to help with his sleep?

There are charities you can apply to for sensory equipment e.g. family fund and Newlife. Also apply for DLA if you haven’t already - the Cerebra guide is helpful when completing the form.

Some special school hold playgroups for those with SEN, if you have one locally that does it’s worth attending as they sometimes have professionals on hand to give advice.

Apply for an EHCNA too.

Thank you so much for your replies, @EliflurtleTripanInfinite how old is your ds now? It’s really encouraging to hear how the gap has narrowed for him, and that he can identify his struggles. Did you get very early intervention with him? I wish I could anticipate him waking it’s usually between 11:30 and 2am but we usually are awake for 3am, any tips for surviving on such little sleep? Lol

@JustKeepBuilding thank you so much for the information, I wasn’t aware a 20month old could get dla as toddlers need so much care already? I will look into that and is OT an occupational therepist? We tried some sleepy sticker things, again I sound silly but I didn’t know I could give him anything to help with sleep, is this something I can ask our gp? What is a EHCNA?

seriously thank you guys so much for the help.

You can get DLA for 20 month old DC.

Yes, OT is occupational therapy.

There’s lots of things that can help with sleep, you could ask the GP for a referral to a sleep clinic, or paediatrician if that isn’t who you have been referred to for an ASD assessment.

An EHCNA is an Education, Health and Care Needs Assessment. It is the needs assessment you first request as part of the EHCP process. IPSEA and SOSSEN have lots of helpful information on their websites, including model letters.

Hi, you will likely be advised to apply for dla and then carer's allowance. Do both of those things plus look up chairites like family fund. Get as much funding as you can and use it to get speech therapy and o.t. find good ones though. If you feel they are not understanding your child...find someone else. Buy lots of sensory toys and rly look at him and find any signs of anything he likes and doesnt like. Whatever it is....as long as its safe....make him comfortable. He needs to be as comfortable as possible. My son used to be severely hyper. And i thought he will never ever calm. He eventually did. Took years. Bt we manage his sensory diet well now after trying a million things and knowing all his needs well. Consider a special school for him. That helps too.