My child is Autistic ask me anything

[Justme02]

He is primary school age and also has learning disabilities feel free to ask me anything about him our life coping etc

We are in the uk

Anyone??!!

When did you first suspect that your son was neurodiverse?

When did you first suspect he was autistic and when was he diagnosed? My son is 9 and has been diagnosed with dyspraxia and ADHD but after homeschooling during lockdown I'm pretty convinced he also has autism.

@Puddlelane123 at aged 13 months when he hadn't crawled and wasnt really making any babbling noises

@ListsWonderfulLists my sons autism was glaringly obvious, what gives you concern your son has autism?surely school and professionals would have picked it up

Does he attend a mainstream school or a specialist school?

@Justme02 I've had concerns about my son since he was 2 as he was late with quite a lot of his milestones but he always just about coped until Year 3 where the wheels fell off so to speak. That's when he got diagnosed with dyspraxia and ADHD. We did the initial forms for ASD as well but he fell just under the threshold for further investigation. School were surprised as they thought it was more likely to be ASD than ADHD. I was just happy to wait and see how he goes.

But while we've been in lockdown, it sounds dreadful but I've spent more time with him than I have for a long time because normally I'm so busy at work! And some subtle signs seem to be getting more obvious as he gets older. He's been stimming a lot more, particularly when he's excited about something. He is very literal and 2-way conversations are hard. He talks at you rather than with you. Doesn't read facial expressions. And he misses a lot of messages from his body, i.e. he doesn't feel hunger, thirst, the urge to use the toilet. Apparently that's to do with interoceptive awareness? Still learning. People have said he's quite like many girls with autism who often float under the radar until secondary school. Certainly I can see the gap between him and his peers widening in terms of social skills as he gets older.

How is your boy doing now? Is he at mainstream school?

School/professionals often don't pick it up, @Justme02. Both my children are autistic, and both times school wouldn't refer as they had no concerns, instead implying poor parenting. Went via the GP, saw several consultants, saw CAMHS - hey presto - both diagnosed.

Do you have any other children?

@Justme02 Is your son verbal? My brother is 9 and doesn't speak at all, he's just started using that red book at school (i cant remember what it's called, the one with the velcro and the words and pictures) so hopefully he will be able to communicate easier in the future. Also, how much help have you had? I find some people use it to their advantage and i think it's sad, where as my mum struggles to get help from Drs, funding and stuff.

@ListsWonderfulLists in some ways it's harder for kids who take longer to diagnose, they struggle along putting in a front but inside must be turmoil with all the sensory overload Autism brings.i hope you get him seen by the right people and he gets his diagnosis and the help and understanding he will need.

@GoGoPowerScooter I'm sorry you had to fight for people to take you seriously, I guess as my sons Autism was so glaringly obvious it wasnt that type of fight for me

@Cauterize yes 2 other boys,both typical children

@Oldestchild90s sorry for your brothers struggles, it's so hard isn't it?if there were appropriate specialist places available for all autistic children from toddler straight through to adult then I believe these children would have more of a chance in life as they say the earlier you work with them the more they can learn.unfortunately most parents are overwhelmed with the diagnosis and often dont know what to do and how to help their kids,they don't get the early help they need and often end up depressed and struggling.

@Oldestchild90s my son is 10 and completely non verbal and hasn't learned to communicate in any form because of his severe learning disabilities,mostly it's a guessing game to work out his needs.

I have a ds with ASD and LD age 9 who is predominantly non verbal.
My questions are:

What do you find most challenging about raising a child with such high needs?

What have you found that helps you cope through difficult times?

Was your child with asd your first child and if so were you worried about the risk of his siblings being born with additional needs?

How are his siblings with him do they have a good relationship?
I always feel bad that ds is an only child even though he is quite happy doing his own thing.

Do you have much support to get a break and have you ever used respite?

How has your ds coped with lockdown?

@saturdaynighthayfever
Hello friend,just saw your message

I hope you're doing ok,I hope life isn't too hard for you and your son.

Most challenging is trying to make him understand us and understand his needs as hes completely non verbal too.
I find taking him anywhere so difficult, nearing impossible,he runs away,screams non stop,stims non stop,I use a wheelchair but hate the stares it brings, the pity and the annoyed looks,the curious glances and the whispers.

My other children are living a life according to his needs,led by his behaviours,they are young and have missed out on so much because of his Autism, it breaks my heart and makes me feel like the worst parent and a failure. At times we've had frustrated innocent tears and declarations of hate thrown at their brother for ruining everything.

They also adore him and show him so much love,they make me so proud.

He is my last child,my baby who will always remain like a baby. I could never have more,hes broke me in ways I never thought possible.

Hes at a special needs school, they are great.weve had lockdown support from them.family are a disappointment that I've come to accept,they dont care enough and dont want to deal with the uncomfortable truth of his disabilities.

Hes coped ok with lockdown,his Autism is so severe he is completely unaware.

Hes my boy,my love,my pain and I wish nothing more than for him to get his chance in life of a life.