Autism?

[H2H1]

Hello can ANYONE please help me? My son is only 18 months old but I am sure he is showing early signs of asperger's syndrome or ASD. My HV has listened to my concerns and done a social/emotional assessment and then referred my son. Which is very positive but I am also getting a lot of people saying 'It's boys' and 'he's so young'. Me and my husband are exhausted and run ragged and he is our third, a boy and girl previously so it's not our first rodeo and we are sure that our Son behaves vastly differently to other children.
Our son is obsessed with wires, plugs,
plug sockets, chargers and hanging other things like handbag straps and alice bands around his neck. He ignoses his name and repeats the same actions over and over again, for example trying to unlock a door. He does not learn from 'no' he pulls coals off the fire and tries to climb stairs gates and bannisters. He also falls over all the time, drools constantly and has meltdowns when you prevent him from doing something. You can see from above we have to stop a lot of things because they're dangerous. He also loves a routine already and gets VERY distressed if you change it even slightly, for example if you try to change him for bed in another room. He is very sweet and clever and has reached all his milestones with pretty good speech too. I need help with two things 1.) Does anyone have an older autistic child and you felt they were autistic from a very young age and did anyone listen?
2.) Where can you get pre-diagnosis support? With him being so young I am sure it will be a long time if he is diagnosed with anything and how do we cope in the meantime?

I would like to add that we have baby proofed the house over and over again with each new dangerous task he invents and we watch him like a hawk.

PS he was also a very fussy baby and I used to think he was deaf because he wouldn't react to me, until one day my
husband dropped a cup by accident and the baby screamed so we knew he wasn't deaf.

My son was like this, still is really. I first raised concerns when he was 4 months old. The neonatal paediatrician took me seriously but nobody else did apart from dh. He was finally diagnosed with ASD last week aged 6.5 years old.

Where can you get pre-diagnosis support? I wish I could signpost you to help but honestly there isn’t even post-diagnosis support. Don’t pin your hopes on a diagnosis to get the support you need. We were discharged from CAMHS post-diagnosis and when I asked what I was supposed to do I was told to find a charity for support.

He does sound like he is on the spectrum. There are a fair few videos on YouTube that address dealing with a toddler with autism.
Good luck Op.

I thought asd from a very young age he was diagnosed at 5, support isn’t easy to get you need to keep asking , asking. different people, my son eventually got a place in a specialist provision at age 7 but it was a battle to get there. It does get easier he’s now a lovely stroppy teenager who loves gaming. Good Luck op.

Generally, ASD assessment is diagnostic only. There is no post-diagnostic support.

Is he in nursery?

If you can afford it I’d look at enrolling him- for one there is evidence that social settings early can help them learn how to navigate peer relationships. Also early years or “educational” settings can flag things and help you to access support- if it’s coming from a professional setting it may carry more weight.

Ask your health visitor if there is a SEN pre school your son could attend. For support look for local ASD or SEN support groups on Facebook, you’ll find people who can really help with finding what’s available locally and just have others to share your concerns with.

My nearly 3 year old has asd. As another poster has said it’s really the diagnosis and especially with covid we’ve had no real lost diagnosis support and it’s so hard

@Lougle it does feel like you're told your child is autistic and then left clueless.

@bluebluezoo

Is he in nursery?

If you can afford it I’d look at enrolling him- for one there is evidence that social settings early can help them learn how to navigate peer relationships. Also early years or “educational” settings can flag things and help you to access support- if it’s coming from a professional setting it may carry more weight.

I agree, educational settings are very helpful in this regard.

DS2 is currently on the waiting list for assessment but I am sure I first wondered about him when he was very small, no more than 2 or 3 months. So I think you can spot some indicators early on. As an aside, girls also show such indicators but are rammed into the social mold and taught to be social, friendly, fit in etc far more than boys are - I do sometimes wonder if girls with autism do at least get the social lessons drilled into them as a result, while boys are left to drift somewhat (with the hand-waving excuse of 'boys innit').

If you can afford it, get a private psychiatry consultation and assessment and be done. I always say, if you think your child is autistic, it is likely your child is autistic.

I am speaking from experience and eventually got a private assessment when my son was 7. Once we got the Asperger's diagnosis, it all fell into place and we have never looked back. He is 20 now. Never been prouder. The psychiatrist said DS was a square peg and all the holes were round. We needed to adapt to make the holes square. Made perfect sense.
Good luck and best wishes to you x

More positive me is here now, sorry about that.

Portage can be very helpful - they tend to do at home sessions unless in preschool, then they switch the support to the preschool setting.

I taught DD2 eye contact by daily lollipop lady crossings ("We look at the lollipop lady, we smile, then we can look away again").

DD1 has SN (and ironically, has just been referred for ASD assessment at the age of 15!!) so we were already using Makaton sign language. It can help with reinforcing and giving consistency, even if a child is verbal.

Visual timetables and "Now,Next" can be really useful. You can start them really young. By saying "Now....., Next....." It can bring predictability and reduce frustration. E.g. "Now we get dressed, next we have breakfast".

Reducing your language is key. Children with social communication difficulties will just zone out if there's lots of fluff and nonsense in your communication. It's better to say "Peter, shoes" than "Let's get our shoes on so we can go for a nice walk in the wintry weather!"

If you want to teach a new skill and your child struggle with retaining lots of steps, backward chaining is really effective. E.g. getting dressed. Instead of teaching trousers by foot in, foot in, pull up, try getting them almost dressed then teach "pull up". When they've mastered pulling the trousers up, you add 'foot in'. That way, they always succeed.

Distraction and redirection is useful to avoid saying 'No' constantly.

If you struggle with walking safely outside, either a buggy (Maclaren Major go up to 50kg/8-9 years) or reigns are useful. If reigns are tricky, then Crelling do SN harnesses. DD1 wore one until she was about 7-8.

National Autistic Society is a good source of support. You don't need a diagnosis to take part in your local group - a lot of them are running on Zoom at the moment.
www.autism.org.uk/

wow thank you everyone so
much for responding. It is a shame to hear there is little support because it is very hard abd of course you want the best for your child too. I cannot tell you what a relief it is for you to say he may be on the spectrum because where he is so young I feel judged for suggesting it but you know your old child. Thank you for the practical suggestions too.
HV has referred him to portage and he is in nursery who are happy to accommodate a visit from portage and support us with him. Although are happy with his development which is of course good but also may not help with a diagnosis coming our way. They do but him his own toys and give him 1-1 time because they no his needs so I'm very lucky.
Thank you all so much x

My niece was diagnosed at two, and there were indications by the time she was one.

I suspected my son had ASD from a similar age to your DS and was diagnosed at 4.5. He had a traumatic birth and I have a belief that this contributed to it. I raised concerns with my HV at his 2.5 year assessment but she basically dismissed me. He attended speech and language therapy from around 3 years of age and it was the speech therapist who confirmed my fears. It took about a year to get a formal diagnosis. My son is very high functioning so I am lucky, he can be challenging but I wouldn't change him for the world. I would advise keep pushing to get an assessment sometimes this is the only way to get things done, your DS is still very young though and things may change.

Statistically parents are often much more sensitive to differences in their children than nursery staff or teachers at school. Unless you have issues with anxiety which might throw off your judgement I would take your instincts seriously.

Thank you, that's what I think too about educational settings. They are wonderful but he is our son and we know him best. My instincts have always been good with all of mine and I'm not suffering from any extra anxiety conditions that I think are heightening my fears. It is interesting what the poster said about a traumatic birth, I had one with my son too.

@H2H1 Just wondering how things are with your son now? I'm in a similar boat atm.

Hi, thanks for your message. Ironically it is tomorrow that he is seeing the HV next. He went for hearing and balance checks which showed glue ear but that was all. There has been talk of physio and speech therapy for the dribbling and falling but nothing as yet.
His behaviours are really changing, as he's getting older his obsessions seem to be lessening so we're just monitoring that. His speech is good, but obviously the dribbling is a problem. Nursery have written a letter for the HV so fingers crossed.
How are things going with you?