Please tell me your autism experiences

[cbrenx]

Hi

My son is 3 and is currently awaiting an autism assessment. We're really getting nothing in terms of support or advice and are kind of just left at the moment. I was told it would be like this, then all of a sudden we'd end up with multiple people seeing him. I just want to discuss my experience and see what other peoples experiences were. I know it's a wide spectrum but I'm trying to prepare myself and figure out ways I can best help him in the meantime.

I had my suspicions since before he was one. He was a beige eater and used to flap his hands. He doesn't flap his hands anymore and recently he's started eating fruit and broadening his food intake although this is probably to do with starting nursery. These are the signs of autism in which he was referred for:

-Severe constipation (withholder)
-Non verbal or pre verbal I'm not quite sure which but he repeats a lot of words back and can only string together some 3 word sentences. He gets very frustrated when he isn't understood.
-tip toe walking
-likes to line objects and watch them spin
-doesn't follow structure very well and will play on his own
-has some sensory processing difficulties with water I.e hates a bath but will happily play with water on his own terms

• likes his space so cuddles will be on his terms

-no interest in potty training

• continues to drink from bottles and doesn't like cups, he will just flap his hand in a cup and play with the water

He does respond to his name and always has. He points, he smiles and as much as he plays on his own I have watched him care for other children at nursery and give his toys to them if he notices a child is left out. He's very hyper and never sits still. He displays a lot of ADHD traits.

One thing I've found recently is he has an obsession with fans. He always asks for the fan on and will shout fan please and will stand and watch it and shout spin while repeatedly wanting to switch the buttons on and off. However at night if he has a fan in his room or can hear a fan he will scream the house down shouting to turn it off. I'm not sure why it is different at night? But it makes the summer nights really really hard. It's the same in the car when we pull up on the drive he screams for the car to be turned off. Today he has been playing with mine and my mums phone and listening to the screeching echo that phones make when they're next to each other on FaceTime and enjoying the sound?...

I've been told when we do get a diagnosis if he is found to be autistic we aren't told where on the spectrum he is I.e high functioning etc. I didn't really know much about autism so I'm trying to do my research now.

Does anyone else's child display any similar symptoms and have autism too? How did you find the wait for the assessment?

Any advice would be massively appreciated.

Hi, he shares some traits with my 15yo who was diagnosed 7 years ago (including the constipation, playing on his own or with me but rarely his peers, although he shared well and helped others in nursery). We had very little support after his diagnosis but if your son has speech difficulties I'm sure they will arrange speech and language therapy (SALT) for him. Go onto your local council website and look for their "local offer" - there should be a list of all sorts of services for disabled kids, hopefully including a parent support network. Most areas have a autism/ADHD/SEN group who meet for informal coffee mornings - ours is run by Homestart (but not meeting over the summer holidays) and they were very welcoming and helpful to me. Also check out Facebook groups - once I'd joined one, I'd see comments about others and found there are loads of them in our local area which I had been completely unaware of for years! Also Youtube is full of videos and channels on autism - those by autistic people can be very illuminating, just bear in mind that autism is a huge spectrum and there are lots of opinions on everything! Most autistic people dislike the terms "High functioning", Aspergers, etc. although some love to use them - I liked an explanation which said autism isn't a linear thing from severe to mild but like a vegetable soup with varying amounts of different veg in it, everyone is a mix of traits that may have little affect on their day-to-day life and things that are more challenging to live with in a neurotypical world. The fact that you have already noted down some of his challenges, needs and strengths is great - keep doing that, it is valuable for his assessment and for getting help and support, especially for his educational journey. Finally (for now!) I did an online course about sensory information (from what you said he probably hears/processes noises and sensations from within his body differently from neurotypical people), it is free and was worth an hour of my time www.sensoryintegrationeducation.com/courses/understanding-sensory-processing-and-integration-in-children-a-guide-for-parents-and-carers

I hope you don't have to wait too much longer for his assessment and remember, he is lucky to have such a concerned and pro-active family.

Hi, so many questions so I will be brief.
many children with ASD enjoy watching things spin so the fan obsession is “normal”.
beige diet typical of ASD.
Aspergers Syndrome is no longer an expression which is used and an ASD diagnosis will not confirm where on the spectrum as no 2 are ever the same.
ADHD is another neurodivergent condition commonly associated with ASD, LD etc.
National Autistic Society, ERIC toilet training and I CAN (SLT) are all excellent resources.
very little is offered for behaviour, but www.mihealthcareservices.com have a parent course on that.
hope this helps.