To think it’s really hard for autistic children at the moment

[Scottishmum1984]

This really struck a chord with me as my friend’s son is struggling at the moment. www.edinburghlive.co.uk/news/edinburgh-news/edinburgh-mum-shares-heartbreaking-reality-19325731?utm_source=linkCopy&utm_medium=social&utm_campaign=sharebar

On the "with autism/ autistic" debate.

I don't care, I dont find it as something offensive or derogatory. Retarded/spastic and those type words are obviously not acceptable. If you're using ASD or autism/autistic you're fine.

Although "is ASD" is just stupid and ignorant, no your son ISN'T autism spectrum disorder, he HAS ASD or IS AUTISTIC.

I can only ever cut my son’s hair and nails when he is fast asleep. He’d have no problem going in to a barbers and sitting in the chair, as soon as his hair was touched though he would try moving.
I’ve become quite good at the chop and turn-him-over technique.

The change of routine has been difficult for my autistic DS. His meltdowns break my heart. He finds the hairdressers hard especially when younger. I just didn't take him. His hair grew long and I trimmed it myself. I have to admit I find it sad when parents push their DC to do something so distressing just because it is the norm.

@Nottherealslimshady - I don't think 'is ASD' is ignorant. It's just shorthand for 'is autistic'.

We are currently undergoing an autism diagnosis for my eldest boy. He is a wreck. All of the in and out of school is really damaging him. So much so that he has started pulling his hair and eating it. He has a large and very visible patch now. He's not sleeping properly and has been in my bed most nights since mid september. He's currently downstairs with my husband having a meltdown while I brush my teeth and write this. He's exhausted

@LegoPandemic - I think it is always best to check with the individual. However myself, my son and most autistic people I know prefer to be described as autistic rather than has autism. For me it is because autism is not an illness or a disorder. It is not something that can be cured or treated. You are NT and I am autistic. It is who I am as it completely effects my outlook on the world in every moment. Hope that explains it a bit.

I also think it's been hard due to not being able to see the paediatriction/OT and attend groups.

DS2 8yo has classic autism (autism plus learning difficulties). he loved lockdown - huge reduction in the demands placed on him (putting uniform on, leaving the house, going on a set journey in the car, into school, all the school day with the set times and places and length of activities etc). So no problems there.

Th huge difficulties came with having to re-insert him back into those routines. We'd worked hard to integrate him at a pace that he could cope with, and he was making good progress, given his levels of difficulty. But his already extremely high levels of rigidity and control were made even higher. Add to that the queuing in school, tight timings and turnarounds, increased hand washing and santising etc.

So, yes, Covid-19 has had its impact in many ways, and will continue to.

Well exactly @Mylittlephonyy. Which makes it all the more when posters get jumped on for using the wrong form of words.

@heydoggee - I agree most prefer identity first.

@Nottherealslimshady - I don't think 'is ASD' is ignorant. It's just shorthand for 'is autistic'.

of course it's ignorant. It seems to be only used relation to Asd.

The first two weeks of the first lockdown were great. After that it was all downhill. I was in and out of hospital with pregnancy complications and couldn't keep up the routine my daughter needed.
She's better now she's at school although we're actually isolating at the moment. Masks are another challenge as she will not wear one. I have tried different ones and she screams and hides under the table if I try to enforce it. So I don't and just endure the muttered comments.
Her extra activities have all been cancelled which affects her sleep.
I know it's not been easy for any children but do feel children with additional needs have had it especially hard.

I think it is always best to check with the individual.

You realise that a huge proportion of those with Asd have so learning difficulties and are not cognitively able to make this distinction? DD has severe learning difficulties on top and does even know she has Asd. It's the high functioning crowd which thinks they are the voice of the autistic community - but they aren't.

Quite @dairyfairies.

My DS likes wearing his mask - he likes to hide behind it. He finds it hard to understand if people don't follow the rules. At one time every time he came back from the shop for example he reported to me on how many people weren't wearing masks!

@dairyfairies - apologies. I should say check with the individual or carer. In the same way we would check what someone likes to be called - clearly if they can't give a response themselves then the carers can.

@Pumkinseed - Sorry I don't understand - how is it ignorant?

@Pumkinseed - Sorry I don't understand - how is it ignorant?

well, you would not say e.g. 'he is diabetes' of 'she is asthma' would you? So why do you think it is of to say someone 'is Asd'. I don't get it?

@UndertheCedartree ASD is shorthand for Autism Spectrum Disorder. Nobody IS autism spectrum disorder, nobody IS autism. Just like nobody IS epilepsy, you'd never say "my nan is diabetes" would you? Or "I am depression".

I feel like it's coming from a person that hasn't even bothered to know what ASD means, and therefore have little knowledge of autism despite it usually coming from a parent or relative of an autistic person. Or they think their child is nothing except their autism, and that's sad.

My DS has really struggled with the constant routine change. And home schooling just didn’t work!

@dairyfairies approximately half of autistics are intellectually challenged, only a 3rd have an actual intellectual disability. The rest of us are called "high functioning" doesn't make us even close to neurotypical though.
Surprisingly, autistics are the main voice of autism, or they should be, how could you possibly think that they shouldn't? High functioning and otherwise, we ARE the actual autistic community. No autistic should be marginalised from that community based on how severely their autism is affecting those around them. You have no idea what's happening in the minds of autistics unless you're autistic or ask alot of autistics.

High functioning and otherwise, we ARE the actual autistic community.

you seem to assume there is one autistic community. there is not. My daughter has nothing in common with the high functioning crowd who often thinks they speak for the autistic community.

You have no idea what's happening in the minds of autistics unless you're autistic or ask alot of autistics.

I think this amplifies the issue with the neurodiversity movement where only 'autistics' can speak for those on the spectrum.

I do know know what is happening in Dd's mind. Nobody does and she cannot verbalise it. Where is her voice if you argue that only those with autism can speak for the autistic community. You say no individual should be marginalised by you do this by excluding those with severe Asd who cannot speak for themselves but only have their carers to advocate for them.

My daughter, along with many others with severe Asd has only her family/carers who speak for her. It is certainly not those on the HF end who think they got an understanding of what it is like to live with severe intellectual disabilities and Asd...

@heydoggee

Autistic people prefer not to described as 'having autism' or 'with autism' btw

We are not a homogeneous group. We have our own minds and not everyone thinks the same. Thanks.

@UndertheCedartree

I also think it's been hard due to not being able to see the paediatriction/OT and attend groups.

The groups are what's hurting us too. We rely heavily on our local NAS and Carers groups for socialising. That's the only in-person socialising teenage DC does (no friends at school) and we've not been able to do it since February

daryfairies I completely agree with you. My DS sounds very similar to your DD.