Where do I start? Possible autism

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Good morning,

I'm sorry if I've posted in the wrong thread still trying to get used to the website but I was wondering if anyone could help us - my son is 19 months old and is showing traits of Autism (I'll put a list below, bit long but just so you have an idea) and I don't know where to start, I messaged my HV but have had no response, I messaged an autism organisation but they just sent me information on how to become a member and my GP isn't really available.

I have a paediatrician appointment in December due to my son not walking and even though it's not long to wait we are really struggling because he's a very big boy, he's only one but he's as big as a 3 year old (I'm not exaggerating) his 2-3 clothes are becoming a bit small on him and the issue is we're struggling to carry him, we use a pram and things outside but in the home it's hard to carry him upstairs and downstairs, putting him in and out of the bath etc even my husbands starting to struggle now because he's getting to a size where you shouldn't really have to pick them up if that makes sense and it's a real struggle.

I just feel hopeless and not sure where to turn so any advice is welcome :-

(Here's the list of traits we've noticed:-

Doesn’t respond to his name at all.
*
Doesn't like being cuddled or touched - he will very rarely give cuddles and a kiss but most of the time he doesn’t want to and will get quite distressed if you try to.

Doesn't use gestures. Doesn't shake their head yes or no. Doesn't point to things they want.

Doesn't point out objects to show interest in the world around* him.*

May limit speech to repeating what they just heard. He's also losing words, he's stopped saying mama, dada, cat, grandad etc all he says now is no and hiya.

Withdraws. Seems to tune people out and be in their own world.

Doesn’t walk at all - has stood once, refuses to stand.

Less likely to show concern (empathy) for others - laughs if he sees anyone crying.

Less likely to bring objects of personal interest to show to a parent

May not look at objects or events a parent is looking at or pointing to

Less likely to use toys or other objects to represent people or real life in pretend play

Rocks, spins, sways, twirls fingers, walks on toes for a long time, or flaps hands (called "stereotypic behavior" or stereotypies)

Likes routines, order, and rituals; has difficulty with change or transition from one activity to another

May be obsessed with a few or unusual activities, doing them repeatedly during the day
Plays with parts of toys instead of the whole toy (e.g., spinning the wheels of a toy truck)

May not cry if in pain or seem to have any fear - water temp, teething etc *

Doesn’t seem to listen

Prefers to play alone and doesn’t seem to understand feelings in other people

*Appears to ignore your request

Repeats certain words or phrases constantly

Throws frequent temper tantrumss* in response to minor changes in routine

Intentionally — and repeatedly — inflicts harm on himself (such as banging his headd*)

Acts obsessively interested in something — a rug’s pattern or the spinning wheels on a toy

Has unusual food preferences

Lines up his toys*)

Sorry I've accidentally made it bold and don't know how to unbold it.

Thank you

If you suspect autism, and I agree further assessment is warranted, you need a referral to whoever assesses in your area - in some areas this is via community paediatrics and in others it is via CAMHS. In some areas you can self refer, if you can’t you will need to push the HV or GP to refer.

Focusing on the physical aspect. Is DS under a physiotherapist? Has he been assessed by OT? You can ask about being assessed for aids and adaptations.

Thank you for your reply @LargeLegoHaul - I don't know who does the assessments but I'll try and find out, if not I'll call the main HV line and see if I can speak to someone and if not I'll keep pushing my GP - I know sometimes you need to be persistent with it.

All I have is the paediatrician appointment on the first of December to try and find out why he isn't walking.

If you haven’t had OT or physio input you could see if in your area you can self refer to those too and if not ask for referrals to them.

You need to keep contacting HV until they make referral to children's centre but I doubt they will do much before he is 2. This will get flagged at his two year check. It's not common to have a diagnosis before 2 in the UK.

Just concentrate on reading up on autism and educating yourself on how to be the best parent you can. There are lots of books and parenting groups on facebook

Also look up portage - they might be able to help you.

He will likely need lots of help physically so I would do some weights and get stronger. I'm not joking. My son is 3.5 and the size of a 5 year old. He needs a lot of help.

Also please don't use this word. It's awful.
Moves spastically — flaps hands, rocks, or spins his body in a circle

I apologise, it was copied from a website which discussed autism and I just copied and pasted to my list what I thought my DS was showing - I didn't even think. I personally don't use that word.

Thank you for your advice.

I actually thought it said "sporadically" like he moves like that occasionally but not all the time. I'm going to take it off my list. I am really sorry if I offended anyone, as mentioned I don't use that word.

I'll report it and ask mumsnet to remove the sentence.

It's okay it was clearly an accident. I think the term is more widely accepted in the US but not in the UK where it's derogatory towards disabled people.

Don't worry.

Did you manage to speak to any HV?

I messaged my HV on the 17th and had no response but the hub is closed over the bank holiday, I'm gonna speak give them a call tomorrow to see what I can do