Published on 12, July, 2020
Hello. I have a little boy who's three. Looking back there were signs something wasnt quite right. He didn't sit until he was 10 months old he started to crawl at 13 months and learned to walk at 19 months. This past year we have really noticed things just aren't quite right especially with having an older child I shouldn't really compare the two but it's do difficult not to when things are so different between the two children. My little boy will only eat beige foods waffles, noodles, chicken or chips. I try to offer the healthy meals we have but he physically gaggs then will go in to a meltdown. I give him a daily vitamin and he does like some fruit. He has an obsession with red London busses and will sit for hours and watch the wheels turn on them he has a large collection. When we go out in public he just wants to sit on a bus all day and it's a big challenge trying to get him of a bus. If we go in to a supermarket we have to take a red pepper an actual red pepper that he will hold once we are in the supermarket it all seems too much and he will cover his ears and tell and cry and shout OH NO. Trips out he will have no danger awareness at all and I seem to feel anxious on busy roads. He was doing quite well on the potty but a big step back and he's refusing to use it so back in pull-ups at age 3 and 1/2. His speech he doesn't respond to his name at the 3 year development check she said she would refer him to hearing. He can hold a small simple conversation he just looks like he doesn't have a clue what you are saying and won't respond back. But knows a massive range of vehicles and can tell me the names of many vehicles. Other than that his speech can be quite babbily and not make much sense although he will say drinky for a drink and say outside to go outside but can't say can I have a drink or I want to go outside. When the nursery nurse came out to do his development check these things were picked up on immediately I didn't even have to say anything. He was having a 'bad day' throwing things around screaming burst his youghurt all over myself and the nursery nurse all because she moved something from its place. We have been refered for an autism assesment as everyone seems highly suspicious including my self. He is such a delight and when he gets exited he bits down on his dummy (has a big attatchment too) and flap his hands and make noises. The nursery nurse refered him as urgent but they wouldn't accept it because he doesn't meet the regression criteria and have put him on the standard waiting list which is 12 months!!! I'm unsure what that means but to me since his referral the stopping of using the potty and back in pull-ups it's a big step back. Also people can be so rude people - strangers have come up to me when he's struggling and with his hands on his hears asking me to control him and think of others. The referral is 12 months wait, I'm so anxious as we apply for his reception placement in December although everyone's preety clued and think it's autism without a diagnosis until then it's so long to wait in limbo with no help no advice and no support for him starting pre school and then reception. Can anyone advise please can we speed this up? He is such a delight and he will always be precious but I just want the support for him in education settings. Thank you so much.
I love his fascination with automobiles! And the colour red. Are there any auto museums near? Does he have ones he can take apart and put together? We tend to prefer toys with actual functionality.
But first things, buy Ear Defenders!! They are amazing. I wear ear plugs everywhere now I'm an adult, but he might like RED ones in particular. They might feel odd at first, so you could try taking them with you and seeing if he snuggles into them in a loud space. You could carry a compact mirror and see if he enjoys watching himself wear the Big Red Ear Defenders while sitting in a trolly.
We cannot dull our sense and so sounds, the collexion of noises, the frequencies and electric hums can be intensely painful. All sensory elements can be felt a greater intensity. We need shielding and help from our parents for proper protection. The world is a loud, chaotic space and it is not human-friendly. This can put us into a Fog - a blur of stress. The possibility here is that when we are overloaded with a flood of emotions, we cannot think clearly. This happens to Autistics daily due to the inability to dull our senses.
Language is a big developing factor for maturing and relating. We might use our full brain to reason rather than be more focused in our language/semiotics lobes like our non-autistic peers: https://www.huffpost.com/entry/autism-brain-symmetry_n_5841d0b1e4b0c68e0480b469/amp So we mature and develop different. We learn different.
This isn't necessarily a bad thing. A thriving human with Autistic Neuro-Wiring simply develops different, but will get there. However, what appears like a step-backwards is just a way of re-adjusting to make space for new learning. We tend to learn more completely one-thing-at-a-time. From base fundamentals, working out all the parts, then move on to the next. Let's think about this with cooking: I'll learn how to use heat against a pan. Spending time working out how different metals respond with different textures. Then I might need to stop focusing on that while I can learn to make the right colour and viscosity of a batter. Eventually, once I have the other hyper-focused thing down, I'll make an attempt to do both in the same space and go for a pancake. So, he may be focusing on learning something specific and come back to using the loo as part of a routine. This hyper-focus is how we work best for a lifetime. The key to winning your child's trust is: Unless there is an imminent threat, never interrupt. Second, incorporate giving proper warnings and room to transition. I know therapists who suggest we should actually do this with all children, but the Autistic Monotropic brain is intensely affected by interruption of all kind. However, capable of excellent hyper-focus, a desirable trait for employers. https://monotropism.org
As for food, kids don't need much is what my grandmother used to say! Does he like smashed fruit bars or oat / sports bars? Some are suitable for children. I used to give my son a particular kind when he was young and nothing else worked. If he likes a vitamin and will have fruit, you're good. A million years ago humans might have a little fish, foraged mushrooms and berries daily. Chicken, peeled apple, a potato with butter and you're already winning. Many of us can have gut issues, so it's a matter of urgency to Never Force-Feed us, it can be incredibly painful (or deadly) if there's an unknown allergy. We might dislike a thing from taste/smell because these are connected to our gut, and our senses, which aren't dulled can identify harmful items we cannot digest properly. He may have defaulted to a colour system for the moment if a few food items don't cause issues.
He sounds autistic, btw. And yes, it can take years to get a diagnostic. Ear Defenders will help him be recognised as Autistic in public, but also it sounds like he could wear more red to be noticed - to ward off impending danger :)
You dont need a diagnosis to get help , help should be given for whatever needs he has , x
Hiya,
Your little boy sounds lovely and you are clearly doing a great job.
what motivated him to use the potty the first time? sticker chart with a toy red bus when he has certain number of stickers? don't worry too much about that as you know he can do it.
people are really rude and should either be kind or mind their own business. you don't need to do anything however if you wanted to you could get a sunflower lanyard for him. or a badge which says he is autistic. however to be honest, people just need to be kind. that's not helping you or your son.
not sure if you have a primary school in mind however when you have a look round, take him with you so he gets a feel for the place. talk to someone about him. when the place is confirmed, phone the school and arrange a meeting with the head of AEN and discuss his needs. they are usually really helpful and care about the children so it shouldn't matter too much about the lack of diagnosis, especially as he has been referred anyway.
Not sure how to speed the process up. you could obviously go private but obviously that's expensive. you could try talking to his GP but not sure if they can do much.
I understand that you want the support for him. you want him to feel comfortable.
Alisha xx
P.S. good luck
Hi NAS81404,You might want to have a look at the page here on the NAS site about getting extra help at school - https://www.autism.org.uk/advice-and-guidance/topics/education/extra-help-at-school/ - which covers various aspects of the support schools should be giving to children with special educational needs. Although you may not have a diagnosis yet, you should be able to start planning with the school to accommodate your son based on the traits and behaviour you describe. Our general section on education can be found here - https://www.autism.org.uk/advice-and-guidance/topics/education - and the pre-diagnosis advice for parents can be found here - https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis/parents-and-carersHope this is of some help,Ross - mod