Autisim - biggest issues?

[EdtheBear]

Reading various threads on ASD and trying to understand it a bit better.

People who have it or are very close to people with it. What would you say it affects you?

Triad of impairments...

Sensory issues
Rigidity
Social communication and imagination ( can't remember the exact wording)

Sensory can be hypersensitive or hyposensitive in five senses plus vestibular and proprioception. ( Balance and knowing where your body is in space)

My 7 year old son is autistic and he struggles most with social issues and anxiety.

Completely life changing. DS1 attends a special school and will most likely never live independently. We are hoping he will manage some form of part-time job with support, but that’s all a few years away anyway. It’s bloody hard and I wish I could change things for him so that he didn’t have to struggle so much every day. But he’s funny, fabulous and gets away with saying things that the rest of us are probably thinking but don’t dare say! I gather that the total lack of filter is a very common trait in autistic people!

The spectrum is so wide that from person to person ASD can vary massively. Some people have the diagnosis but do well at mainstream school and live pretty normal lives. DS isn’t one of those people, but that’s just how it is. We muddle through and are immensely proud of him. For the most part he’s a happy soul and that’s the most important thing.

(Waves at x2boys - I think we’ve compared ‘autism notes’ before!)

Not knowing what to expect in the future is the thing I find hardest.

People saying that being autistic isn’t a negative thing, which in itself is true, but my boys are severely affected in some ways - no understanding of language, non verbal, very little interest in others (although this has improved somewhat).

It’s not a quirk for them, it’s impacting every aspect of our lives.

Just in her own world half the time and it's rare you get to have a meaningful connection that's not one sided.

For us it is the demand avoidance and the need to control. This all comes from anxiety. At home things are pretty good and DD is lovely company much of the time. School is horrendous and she has been in s special school for year 6. She is quite sociable and communicates well (on her terms). She is desperate to be normal and seeing her miss the normal year 6 rites of passage has been hard to deal with.

Anxiety. But mostly other people’s reactions to DS.

Quite possibly Catkin!,Yes I agree @Sinkgirl it isn't a quirk for my son it's a real disability , I have to stay away.from autism Facebook groups now as in get annoyed with people saying how wonderful and amazing autism is , it might be for some people,but not for everyone.

Part curiosity and part DS school have hinted to it. And referred to SALT. I'm not saying DS is perfect but don't see him as Autistic

Jeepers. This is truly awful.

Your son is 'not perfect but not autistic'? Judgemental, much?

My daughter happens to be both autistic and perfect, herself.

I was beside myself when the boys regressed and I didn’t know why - one of them in particular regressed pretty much overnight and I was terrified. I was part of a few parenting groups who were very critical of my concerns about them possibly being autistic, telling me it’s not bad thing, it’s no big deal. And yet here we are, nearly 3, DT2 still in the under 2s room at nursery with the babies as he just can’t be kept safe with the toddlers, no words, little play, minimal eye contact. It’s absolutely heartbreaking every single day. He used to look at me and smile and laugh and clap and copy things but that all stopped one day, like a big part of him went away.

While I’m sure ASD is no big deal for many, just who they are, for us it’s brutal and I hate it.

I always argued with anyone mostly my mil who ever suggested my ds was autistic as he didn't have any of the typical pointers. lack of eye contact or arm flapping or any other things I read about but at the age of 12 he got diagnosed.
His issues are problem making friends and lack of focus at school. I hope once his school gets the official report they will take this on board because all of his school reports say the same thing needs to focus.

This may be a stupid question and I'm sorry if I offend anyone but its something I've been thinking about for a while. My step son has ASD and like so many people have said anxiety is his biggest issue.
I had anxiety and went to my gp and got mwdication that helped with it. Do these not work for people with asd? My step son is an adult now and barely leaves his room due to anxiety and although he has been to many professionals over the years no one has ever suggested medication and I was wondering is there a reason for that?

Teenage years with boys from 12 to about 14.5 were a nightmare with ds, meltdowns, anxiety, depression. He is 15.5 now & we seem to be coming out the other side. He missed lots of school, I couldn't get him to do anything he needed to, he was quite scary being well over 6 foot & well built.

It effects every area of my life, I feel the world isn't built for me. I've found it a lot harder as an autistic adult then I did as a child, I don't think a week has gone by in the last 4 years where I haven't cried at least once.

@Merryoldgoat sounds exactly like my ds! hes such a gentle boy. He is such a darling with his young brother but he also goes off on different subjects. Normally starts with " hey mum " then goes on about some random thing that he has remembered. It can be hard at times. Like trying to get the boys out the door in the morning but he must tell me something. Hes also a nightmare at eating anything thats not beige

A close family member is autistic. The worst thing (for me, for much of the family) is the inflexibility of his thinking - he is just so sure he is right. And his inability to see how his actions/decisions impact others. It is really difficult to understand how he can be so bright in very many ways but so blinkered in others, but that's the autism.

And those ^^ are the bad things. There are so many, many good ways in which he impacts us all too. He's happy to apply his many skills to helping other people out and very generous with his time too. And he is the most honest person I know. And those things are also aspects of his autism, not things he does despite it.

People who ignore everything I say (like "please don't touch me, it hurts"), inadvertently goad me into a meltdown and then complain when it happens.

Also people who tell me off for being so rude as to wear my noise cancelling headphones to manage my sensory issues.

So, basically, other people.

I'm not saying DS is perfect but don't see him as Autistic

Why not? Serious question.
I think what you mean is he doesn't appear to have what you think is autism, which is probably not a true picture.

If he is autistic, he was born with it and will always have it, whether there's a diagnosis or not. If by some miracle he was diagnosed by a multidisciplinary team tomorrow, he would still be the same boy he is today, you would not see him as any different today than you did yesterday. He would not BE any different today than he was yesterday.

I'd suggest you do a lot of reading and watch a lot of videos about autism. The SN boards on MN are a mine of information and help, particularly SNChat and SNChildren in my opinion.

You are likely to encounter a lot of myths and prejudices along the way.

Everybody seems to have an opinion on autism, yet they often know very little about it. Unfortunately, most are in denial and insist your child could not possibly be autistic. Ignore them.

Please be acutely aware that no-one can diagnose your child with autism or say definitively that he does not have it apart from a (team of) qualified clinician(s) who are trained and qualified to do so.
The team often consist of Paed, Ed Psych, SLT and OT, there are others but that's usually the main ones who all assess children and reach a conclusion after much testing and comparing results.

Autism is a medical diagnosis, see above. Many people disparagingly refer to autism as a label, that is so demeaning and disablist. Autism is a medical diagnosis, the diagnosis is not given lightly, sometimes the process can take years. A medical diagnosis is not something you stick on a jar of jam or a suitcase, so why refer to autism in such terms?

No empathy, cannot make eye contact and many more boys than girls have autism are common myths and are repeated by people who really should know better.

'We are all on the spectrum somewhere' is the biggest load of codswallop, see here for a very good explanation. A few traits does not mean someone is autistic.

theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

Here's a more child-friendly view
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

This thread perfectly outlined the benefits of diagnosis in childhood, in case you've not seen it.
www.mumsnet.com/Talk/am_i_being_unreasonable/3629648-to-avoid-getting-my-son-diagnosed?pg=1

One of the worst myths is 'High functioning' means mild autism, no-one would know they have it' 'High Functioning' means someone has an IQ over 70. Nothing else.
There is no such thing as mild autism either, the diagnostic criteria say "The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning". Source NAS www.autism.org.uk/about/diagnosis/children.aspx

A lot of people who will be replying to your thread will have young children with autism. As the parent of an autistic adult, I'd like to say that my experience is that the behaviour you see as a child changes as the child grows up. Some things that would provoke instant meltdowns for hours in childhood are able to be tolerated in adulthood. Don't think the presentation of autism you are seeing will always be the same. Some things diminish, some heighten and others stay in the background. The anxiety will always be there, but the individual can learn to cope with some of it resulting in reacting in much less less extreme ways to whatever triggers the anxiety.

It's a vast subject, made more difficult to understand because everyone who as autistic can present in a totally different way to someone else who is autistic. It's best to understand your own child and then advocate for them to obtain the interventions they need to be put into place at school. Your current school sounds as though they are very pro-active. They are not telling you there is something "wrong" they are telling you so that you can pursue a diagnosis and IF your child is given one, they can put in extra support.
In theory, schools should be able to support every child based on their needs alone, in practice, a diagnosis can help to secure extra funding.
It all depends on what area you live in as to what services are available.

Some kids with ASD have a lot of sensory processing needs, here's a very informative leaflet www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

DS is 10yo and autistic. Other DS is 5yo and recently diagnosed as autistic. For me, the biggest issue is the future. I try to avoid thinking about it too much unless I want to guarantee myself a sleepless night. The main worry is what happens to them when I'm gone? We don't know how they'll develop and whether they'll live independently, with or without support, and if they do live independently they will be vulnerable. This is a horrible world in which to be vulnerable. If I really let my anxiety take over I can come up with a million different scenarios from drug cuckoos taking advantage to them being manipulated into breaking the law and going to jail (the support worker from CAMHS put that particular one in my head when she told me she has several teens on her books persuaded into shoplifting by people pretending to be their friend). I worry my NT children will feel obliged to care for them and that it'll restrict their lives the way it restricts mine. I worry about the suicide rate. I worry that I'll still be dealing with violent meltdowns in my old age, what happens when one of adult them shoves 80 year old me?

So yes. I don't think about the future.

The other issue is the stupid shit people say. I've been asked what their special ability is because all autistic people have a "super power". I've been asked where they got it from, as if it's an infection. I get told frequently "aw, but you wouldn't change them, would you?" and have also been told that God only gives special children to special families along with the news that apparently God only gives you what he knows you can handle so he obviously knows I was more than capable of dealing with these children. God can kiss my arse, frankly. Another favourite is the people who think its naughtiness and tell me "send them to me for a week, I'll sort them out!" when we both know they'd be rocking in the corner and begging me to take them back before the end of the first day.

Have to agree with the people who say anxiety is the biggest problem.

Ds was in an asd unit in primary school and the head of the unit said that most of the pupils in the units were there because of the anxiety related to,the autism rather than autism itself.

And what teamunicorn said at 19:12:04 about lack of help

Unless of course your dc are suicidal in which case you will get seem by cahms approximately 1 year after they try to kill themselves

*There's a saying about ASD that pretty much nails it, which is 'if you've met one person with autism...

...you've met one person with autism*

We can all give you what our dusablity is to us but we're not your son!!

I work with several fellow auties, our experience of it is increadably different.

That said chou YES YES YES i'm pretty sure i'd find life loads easier without other people.

NT people ignoring autistic people’s views on how autistic people are treated unless it’s what they want to hear, or because they’re not “severely” autistic enough

Ds1 (aged 13) has aspergers syndrome and ds5 is being assessed. Biggest issue for ds1 is incontinence followed closely by him wanting to be part of the nt world but not really understanding how to do it. With ds5 (aged 5) it's the constant running off, not listening, no sense of danger, hurting himself on purpose, climbing things etc. It makes me so scared he is going to get badly hurt one day.

My DD has HFA.
It affects us as she has an extremely limited diet despite us trying everything to broaden her range of food.
Sensory processing issues with sound, light and food again.
She has started to blossom socially but has a complete lack of awareness and filters around people's boundaries and comes across as quite quirky.
Struggles to focus/concentrate. Has tantrums if asked to do something which is not on her agenda.
Very self- directed and only wants to do what she's interested in to the point she dies next to no work at school.
On the other hand she is a fantastic reader and just taught herself. Has an almost photographic memory, her honesty is charming and she is the most affectionate little girl. Absolutely love her but worry about her a lot.

Need to control everything due to anxiety. Lack of understanding others have needs which may make being controlled 24/7 difficult for them.