Published on 12, July, 2020
Hi everyone
im hoping joining here, I will be able to talk to other parents who are going through the same thing. I feel very alone as friends & most family members do not seem to see what I see or are going through. I am constantly made to feel I am a drama queen & he is not any different to other children.
Im not sure where to start really but I noticed when my son was 16 months old that something wasnt quite right as he hardly ever looked at me or anyone else. I remember typing in 'why wont my baby look at me' & then started reading into things & other symptoms of autism came up & I slowly realised he had alot of other 'signs' too. It was hard to judge though as he was still a baby & other people were just saying hes too young to worry about anything like that & as he is my only child, I didnt know what I was talking about to be frank.
At 18 months old, we took him to the hospital as he had tonsilitis (we thought it was more serious than that at the time) and 3 doctors began asking questions relating to autism. It was at that point I knew straightaway my previous concerns were confirmed & it broke my heart. They advised me to see our family Doctor.
We did this & we were referred to an Autism Consultant & since then we are now going through the diagnosis process with different assessments being done all the time.
Although we havent had the formal diagnosis yet,we know our son has autism and I thought I had accepted this & come to terms with it all. But just this week we were completing the DLA form with our sons keyworker & it broke my heart all over again realising how different our little boy is to other children his age etc.
As he is getting older it is becoming more noticeable 'to the world' & us & im finding it really hard & would love to talk to others who understand the struggle.
His sleep is just getting worse (he can survive on 3 hours a night sometimes) & he has never slept through the night!
His eye contact has improved slightly with his dad & I, but he will not look at strangers or family members that enter the room. He will not react to his name being called. He has severe speech delay & only says 'mumumum' or 'dadada' but not in context. He likes to jump up & down repetively & mostly done on the sofa! He will not feed himself & throws the spoon or plate if put infront of him. He will only use a specific teated bottle for all drinks. The ONLY food he will pick up is crisps.
He seems to be fine with change (we have moved 3 times inc different counties) & its like hes been oblivious to any home changes. & he also likes mess, so not the usual there with typical autism traits.
Sorry if I have gone on here but I wanted to give our story & see if anyone else has gone through similar & how do you deal with things?
thanks for reading
Hello, my name is Ferret, I am autistic. Please bear in mind as autistic I can be blunt and that what follows below is 'open' opinion.
This is a two part problem.
Part 1:
You: you feel unsupported and your instincts as a mother had been dismissed or not acknowledged. you have not received any reassurance. you currently do not have enough information, and are now (assessment) being faced with information that at first appears very daunting, if a little terrifying.
For yourself: approach and speak to your GP in the first instance, not about your son, but for yourself, your own health and wellbeing. explain your stresses and strains, the level of stress you are experiencing in and of yourself. you need someone on your side, as a person, not just a 'mother with an autistic son'.
If you have an unsympathetic GP, or you feel your personal needs are not being acknowledge, get a different GP.
Note: it can be frightening and daunting, particularly if you/what you have said, has been dismissed historically. Ironically, you have experienced what it is like to be undiagnosed autistic, in that often many of us know we are, know that there is something 'not quite right', are even told, and yet we are dismissed, what we say for ourselves is not acknowledged, nor validated, and many people do not see what we are going through, and many of us are constantly made to feel like 'drama queens'.
Part 2
The myths: i think it is necessary to take the anxiety(?) fear(?) out of this for you as much as possible, and to give you an insight into autism from someone who actually has it. Hopefully, this will go some way towards giving you some relief and dispel some fear(?) and from which you can take reassurance(?)
Re: sleep<---recombinantsocks has the word on this. their comment is comprehensive. lack of stimulus is paramount. we need peaceful environments. also routine will help, a putting to bed at the same time every night, even if he does not sleep, routine or 'down time' will assist.
as autistics we become very stimulated by our environment - i call it 'upped'. we can't prevent it from happening, but we can do things to avoid it, or lessen the effects. i never slept as a child. i have had chronic insomnia all of my adult life - much made worse by the fact i went undiagnosed for so long and the strain of 'appearing normal'. i sleep when i need to. your child will sleep when he needs to.
Note: sometimes it might be an instinct in a parent not to neglect a child, but often peace is most important for a child with autism. experiment with different ways of de-stimulating the sleeping environment, and see what works best. there is no rule book. as a child i liked sameness, so same blanket, same teddy-bear, same wallpaper even! or favourite plushie might help. i would talk to myself a lot. i was quite happy to lay there and chat away to my bear.
making the routine positive, with positive reinforcement, and calm, will 'de-stress' you, as well as ensure that 'sleep time' is seen as a good thing, and that him 'not sleeping' is not 'read' by him as a negative thing.
Re eye contact: for autism it is all about what is known and what is safe and what is sameness. strangers and others will not get the same response. this will improve over time dependent upon where your son is on the spectrum. i do not look at strangers because they have yet to achieve 'safe' status. autistics are often regarded as rude, abrupt, blunt, stand-offish, aloof, ignorant, stupid, 'deaf' etc. etc. we are not, we are busy, too busy processing all the information we are getting from everything around us.
Re: speech: my speech was delayed. as you can see, i am articulate and able to communicate, as you can see. your son may repeat lots of phrases because it's nice. autistics like repetition - see stimming - also when you speak to him, speak to him all the time, a constant dialogue, he will pick it up even if he appears not to.
Note: word games help, simple ones, also singing, nursery rhymes that teach speech 'one, two buckle my shoe, three four, knock at the door' the old ones, there is truth in them. autistics are visual thinkers, so visual reinforcement of language eg. pictures and words in his environment will help.
Re stimming: we also do something called 'stimming' which is stimulation, repeating things, doing the same thing over and over and over, repetitive vocalisation etc - your son jumps? - this is also stimming I suspect. as a baby, i used to jump/bounce in my cot - i even broke it once, by bouncing out the screws that held it together - see no sleeping - i was as happy as a bee doing this. i also enjoyed rocking, tapping, etc. i had a swing too as i got older. perhaps an idea would be, if you are concerned about the furniture, to get him a bouncer or something he can use specifically for bouncing?
Re food: we are very specific about our food - we like sameness - and also we may have issues of over sensitivity moreso to tastes too in the mix here. i personally liked all food, but this was the result of positive reinforcement from one particular family member whom i trusted implicitly and who made it a sharing and positive experience, plus, we would eat 'on-the-hoof' so to speak, a small plate, a small amount, shared together. i am inquisitive about food even today, but as routine if i get overload, i stick to a very rigid diet of food because 'i don't need to think about it'.
ultimately, i would suggest that as all autistics are different - think of cats with different colours and stripes etc, but we are all cats - it all depends on the positive reinforcement at point of food. again positive reinforcement will help food, specifically sharing, as we learn by copying - repetition. mealtimes could be improved by making it a shared experience. if he refuses food, don't worry too much. as long as he is getting his nutrition in fluid form, this will be okay. - re crisps, he's seen you eat them. try and remember how you introduced him to crisps, how it was done, there will be a clue there. could it be purely that he likes crunchy food, not mushy food - i personally could not put a piece of mushy food in my mouth for love nor money, it's the texture, it's just a no, no, no, no.
Note: when you get your confirmed diagnosis, if you are concerned about his nutrition intake, ask to speak to a nutritionist specializing in autism if you have concerns/to make sure you have that base covered. if it transpires he does not have autism, ask to speak to a nutitionist anyway if food problems persist
.Re: change/moving - if this has occurred since he was born, he reads this as normal, he knows the routine. i moved very often as a child. as long as the sameness was around me, ie, things i recognised in my personal environment, it wouldn't have mattered if i had moved to the moon and back. sameness is important, we cling to it for foundation.
Re mess - mess is lovely. mess is input. mess is fun. mess is information. mess is stimulus. i used to make an awful mess. drag everything out of the cupboards, rattle everything around on the floor, pots, pans, cooking utensils. i still live in a mess, but i know exactly where everything is, like a game of cards 'Pairs'? i can remember. i can see it in my head, like a picture, every single detail. autistics like patterns and details. like a jigsaw.
in fact, conversely, the restriction of having to sit at a table and eat formally is hell for me... too much focus and energy required.. order is not natural, but order in chaos is.
Re: running etc - we need to move, we need to burn off our excess mental energy. your son is doing what is perfectly natural. let him run.
you could have a potential Olympic sprinter on your hands....
A note on autism in general: Clovis has the word on this - many autistics do not feel they 'suffer' the 'condition'. I do however, accept that there is much suffering experienced by parents of children, particularly if their child (suffers) is further along the spectrum and more 'locked in'.
There are many myths about autism. There are also many fears. Don't be afraid of autism, nor of the daunting list of attributes. Get any information from the horse's mouth.
The autistic spectrum is wide, there are many colours. It is not a disorder, and no longer classed as such. Society's attitudes are changing, and there is a lot of support available out there to help you.
Your son is being completely normal for him.