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I think my 20 month old is autistic and I’m finding it hard to find support and guidance. Really overwhelmed right now.

NAS85272

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?

Parents

  • First to address a few things! Just buy one halogen lamp for his room and in the evening, just use this. LEDs are damaging and can feel oppressive to those with light sensitivity as the band of light is unnatural. The best analogy I can give you would be like filtering a song. Take out all the bass and make the high end piercing. The expression of sonic torture is: It makes my ears bleed. This is how difficult it is for the eyes to deal with light which isn't naturally glowing off a heat source (such as the sun, fire or the filament of an incandescent or halogen bulb) Have a look at LightAware.org

    Second, I want to stress he IS communicating. Language isn't only verbal. We say music 'spoke' to us or a painting or a ballet. Humans haven't always used verbal words, but they've still been perfectly capable of designing boats, hunting, crafting tools, clothing, building and collective togetherness. The Autistic that senses an internal difficulty accessing words (most of us do when stressed), might actually be incredibly skilled at other things which most aren't - map making or maths, music or engineering. Words are only one tool of many. Feel free to expand your vocabulary. Children thrive when we as parents are dependable, open, ask how we can help or present ideas for help, when we take responsibly for our faults and always seek their trust (a thing easily broken and not easily mended). 

    He might be helping you clap because there is something enjoyable about the sound. Or there is something to you allowing his request and this is the way he's learned you'll respond with openness. 

    My grandmother had instructed me to never say no when my son was born. She said it was unnecessary. Just redirect. Just be there. I'd offer my son different things and it would give him a little sense of being in control to release what I didn't want him to have and take something offered. 

    Now, as for the seizure and the screaming through the night - it could be important to have him tested for epilepsy, as we're prone to it. And then I might try changing a few things. First is his diet. Most of us have gut issues. And even when things feel a little more normal, I still have to mind I can never have high-fibre veg (no brassicas like spinach and broccoli), absolutely no beans/pulses/legumes, which includes the peanut and no grains except white rice and GF oats. I'm completely Gluten free but also working with a low FODMAP diet .

    Also, I might avoid digital media as much as possible as screens and flashing elements can create headaches. Possibly make sure his surroundings aren't unnatural fibres (polyesters are made from petroleum, so it's essentially a form of plastic) such as 100% cotton and wool. Tree fibres are only good for summer as our biology responds to them and cools itself down. Wool and cotton are biology friendly. I'd also make sure there's no chemically scented candles, plug-ins, cleaning agents like fabric softeners, detergents and such. These can interact with the gut and cause severe head aches as well as stomach cramps. 

    Toe-walking is, to be fair, incredibly enjoyable. Female Autists get away with it more than males as no one thinks twice about heels. Make sure he gets to run and exercise enough. Running as sport and a proper stretch daily can help relieve the need to do this.

Reply

  • First to address a few things! Just buy one halogen lamp for his room and in the evening, just use this. LEDs are damaging and can feel oppressive to those with light sensitivity as the band of light is unnatural. The best analogy I can give you would be like filtering a song. Take out all the bass and make the high end piercing. The expression of sonic torture is: It makes my ears bleed. This is how difficult it is for the eyes to deal with light which isn't naturally glowing off a heat source (such as the sun, fire or the filament of an incandescent or halogen bulb) Have a look at LightAware.org

    Second, I want to stress he IS communicating. Language isn't only verbal. We say music 'spoke' to us or a painting or a ballet. Humans haven't always used verbal words, but they've still been perfectly capable of designing boats, hunting, crafting tools, clothing, building and collective togetherness. The Autistic that senses an internal difficulty accessing words (most of us do when stressed), might actually be incredibly skilled at other things which most aren't - map making or maths, music or engineering. Words are only one tool of many. Feel free to expand your vocabulary. Children thrive when we as parents are dependable, open, ask how we can help or present ideas for help, when we take responsibly for our faults and always seek their trust (a thing easily broken and not easily mended). 

    He might be helping you clap because there is something enjoyable about the sound. Or there is something to you allowing his request and this is the way he's learned you'll respond with openness. 

    My grandmother had instructed me to never say no when my son was born. She said it was unnecessary. Just redirect. Just be there. I'd offer my son different things and it would give him a little sense of being in control to release what I didn't want him to have and take something offered. 

    Now, as for the seizure and the screaming through the night - it could be important to have him tested for epilepsy, as we're prone to it. And then I might try changing a few things. First is his diet. Most of us have gut issues. And even when things feel a little more normal, I still have to mind I can never have high-fibre veg (no brassicas like spinach and broccoli), absolutely no beans/pulses/legumes, which includes the peanut and no grains except white rice and GF oats. I'm completely Gluten free but also working with a low FODMAP diet .

    Also, I might avoid digital media as much as possible as screens and flashing elements can create headaches. Possibly make sure his surroundings aren't unnatural fibres (polyesters are made from petroleum, so it's essentially a form of plastic) such as 100% cotton and wool. Tree fibres are only good for summer as our biology responds to them and cools itself down. Wool and cotton are biology friendly. I'd also make sure there's no chemically scented candles, plug-ins, cleaning agents like fabric softeners, detergents and such. These can interact with the gut and cause severe head aches as well as stomach cramps. 

    Toe-walking is, to be fair, incredibly enjoyable. Female Autists get away with it more than males as no one thinks twice about heels. Make sure he gets to run and exercise enough. Running as sport and a proper stretch daily can help relieve the need to do this.

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