To have certain expectations of autistic brother?

[sniffle12]

My tenage brother has been diagnosed with Asperger's. This was brilliant news at the time as it came after years of bullying and social rejection and he finally feels he can now explain to people why he is the way he is and hopefully get a more understanding reaction as well as the support he needs.

However I've begun to feel that it's now being used as a get out of jail free card for too many things. In my view he's still a teenage boy with all the natural, human faults which come with that - he hates to tidy/clean, eats for England, lives in his room, avoids family events and anything which he doesn't want to do at that precise moment, and spends money like its going out of fashion. Just as I was at that age.

Since the diagnosis, all of this now seems to be going unchallenged. When I question this I'm told 'He can't help it' 'He feels overwhelmed' 'you forget he has Asperger's'. While I'm fully aware of this, I don't think we should stop expecting him to develop some degree of conscientiousness as we would any teenage boy - obviously at the right times, right approach, and in small steps, as I do recognise that his response to demands is also part of his Asperger's.

AIBU?

If it's a recent diagnosis it's absolutely fine for OP to ask questions. That's how people learn.

Hi all,

Thanks for the reports about this thread.

We have been through and removed any posts that we felt broke our Talk Guidelines.

Sniffle12, we know you have been with us for a while and have no reason to doubt your sincerity, but do take a look at our This Is My Child Campaign especially the Myths about Special needs. As Fanjo has already said, there is some information there about behaviour disorders.

Mumsnet exists to make parent's lives easier and if there's one thing we could all do with, it's some understanding and moral support.

And the best way to ask questions is to say they are using it as a 'get out of jail card' in an area of the Internet known for its fisticuffs?
And then disappear?

Like I said, this thread is not in a vacuum.

Ah, x post Helen, thank you :)

It may have been just a poorly thought out phrase.

Perhaps.

I don't have AS but I do have a disability and I don't think this thread is disablist.

if you read the OP, the op very clearly states that it is the people around her brother who are very much not challenging any of his behaviours because "he has Aspergers and can't help any of what he does." So I'm wondering, is it that the OP's parents have potentially slipped into over-protective mode now that DB has been diagnosed with AS and as such are unprepared to challenge any of his behaviours because it might be linked to his AS? Because this is also infinitely possible.

I am VI. Quite apart from the things which people have always decided I can't do I.e. Ride a bike/have children/hold down a job/ever be independent, there are also the things which people would wrongly make allowances for on the basis that "she is blind, she shouldn't be expected to clean/do chores/make her own breakfast."

This mercifully did not happen in my world. But I certainly knew many people whose parents took this exact approach and did absolutely everything for their children on the basis that "they were blind and as such couldn't possibly be expected to do these things."

As such these people have all grown up with zero independent living skills and entirely unequipped for the realities of life in the outside world.

And of course I am talking about a physical,, or visual disability here, but the reality is that while most parents do strive to do the best for their children whatever their disability, and strive wherever possible for them to be independent and grow up with independence where possible and coping strategies where necessary, there are some parents who do take a head-in-the-sand approach and who, rather than working with the disability to enable the individual to get the most out of him/herself, allow that disability to entirely absorb the individual thus meaning they will never develop the skills needed to cope in the outside world. IME it's not malicious, but based on a protective instinct, but it does the child no favours none the less.

I think it's important to understand your brothers weaknesses, in order to help him meet his full potential. Your parents are still in that steep learning curve, as is your brother, in that they don't know yet what his triggers are. Anxiety has a huge role to play in Autism, as does Sensory Overload. Once your brother/ parents can identify the weaknesses they can establish interventions/ coping strategies that will help.

I have a nine year old Autistic son, he was five when his Autism was first identified. It took time for us to adjust and implement coping strategies. We went on several courses on anger management, sensory overload and parenting a child on the Autistic Spectrum. I also read a vast amount of literature on Autism. What we have come to understand, is that in Autism, there is always a reason for behaviours. Sensory overload is a very frequent trigger in Autistic individuals. It is honestly torture just leaving the house for many people on the Spectrum. These links take you to different autism simulations, that will hopefully help you to understand why your brother would rather stay in his room than go outside.

I honestly would want to stay locked in my room too, if I had to experience the world the way my son does!. My son didn't ever want to leave the house, he couldn't cope at all. It wasn't until we realised the impact that sensory overload was having, that we were able to look at different aids to help him. My son will go out now, in fact he loves going out but he needs to have Sun glasses on at all times. He takes his mp3 player and head phones that cut off the noise from outside. He will wear a baseball cap with a wide rim on sunnier days. My son can still get overwhelmed by smells and too many people, even with his ear defenders/ headphones and sunglasses. Which is why he will spin/ flap his hands/ vocally stimulate making loud noises to drown out the noise that headphones haven't drowned out. This constant attack on the senses is absolutely exhausting. As soon as he gets home he is straight under his weighted blanket with his vibrating pillow and the lights all off. If he can't have this time to recharge he will meltdown/ shutdown.

As for the mess, there is actually likely a valid reason for this. Because the world is so overwhelming, autistic people need to be able to control their environment. My son doesn't like change or surprises, if we want his room tidy we need to make sure we have put in his laundry basket and bin where he can see them! We have built putting his dirty clothes into his laundry basket, into our sons daily routine. There are different apps online that people on the spectrum can use to help organise their day . My son needs to know in advance what is happening, we often make a schedule of events, so say there is a family event, we would tell him how we will get there (car), show him where we will be going, tell him who will be there, tell him what we will be doing whilst we are there, then tell him what we expect of him whilst we are there and most importantly when we will be coming home. We also take a bag with his mp3 player, his ear defenders/ headphones and his ipad with sensory apps. As your brother is older your parents can help him create his own schedule and itinerary.

There is a lot of change going on in the teenage years and it becomes very overwhelming for autistic teenagers who are already struggling with sensory overload, social skills and friendships/ relationships. They can just want to retreat from the world and escape to a land of books or computer games. I think it is wrong to lower expectations and allow them to become complete hermits. But I can understand the attraction this has to both the Autistic teen and your parents. There are strategies and coping mechanisms that will help them to push themselves and integrate more with the neurotypical world. But it will take time, research and communication to help find the strategies that will help your brother. There is a fabulous quote in the Autistic world ' if you have met one person with autism, you have met one person with autism' !!!

I think you are being unreasonable OP, but given that the diagnosis is recent it is entirely understandable. As for the eating, that is definitely a teenage boy thing!

I would try to take a look at what your brother is spending money on, is it apps, games, etc? Or is he trying to impress friends? Teens on the spectrum can be vulnerable to exploitation so it is worth looking at the cause of the spending.

Problem is, autism is a condition that has as many variables almost as the human condition as a whole.

Generally speaking, it's best to treat people not as a condition but as a human being.

mummy can you recommend any apps please,mainly for organisational and self care skills? my DS really struggles with them. Thanks

I have a 21 year old son who has Aspergers. He has achieved far more than we ever thought he would. He drives, he works, he does his best in a lot of areas.
He keeps his boots clean, because he loves cleaning them. His room is a tip because he doesn't seem to see the mess. His understanding of money is improving in that he is slowly learning to leave enough in his bank account to cover his standing orders and not splurge all of it on pay day. DH has worked with him a lot on this.
I can't honestly tell you how much is AS and how much is just what a lot of young men are like.

Hi Nicky I have pm'd you as I don't want to derail this thread

My DS has autism and is 17. He does all that you have listed, OP aside from eating for England. I realise that many of them are teen behaviours, but also have to acknowledge that social interaction is more difficult, isloation is comfort, and spending money is a teen thing - not an ASD thing. I have clear expecations for him, but I need to allow him to escape and reset. Otherwise, I run the risk that he will become overwhelmed and really withdraw.

It is a balance, needs to be treated with understanding, but it isn't an excuse.

Wannabe with respect having autism is very different, parents tend to work very hard on coping skills in their children because otherwise their own lives are hellish.

DS2 is ASD and MLD and as craptastic said earlier whilst there are situations where either the MLD or ASD impacts, but we do not give DS a 'free pass'. Between us and college he is learning basic life skills, at home he is expected to keep his room tidy, empty rubbish etc (infact this has fallen into his need for routine as he brings his rubbish and dirty washing down on a Wednesday without fail )

But, as lots of PP have said, each person is an individual so whilst our experiences can offer an insight we can't offer a definate solution

maggie

You said you made repeated approaches to get her to change things and implied those things were socially related. To someone who has a social and comunication related disibility that is work place harrasment and disibility related bullying.
The ability for her to do her job is a different matter and bulkying someone due to a disibility wouodm it be considered acceptable even if she was crap at the job

I think your family need to work with him and have him be honest about what he just doesn't want to do cause he's a teenager, what he struggles with but can manage with support, and what he just can't cope with at all. For example, maybe spending wise he's just a bit silly and living in the moment like many teenagers, maybe tidying his room is overwhelming and he needs more direct smaller steps (I wrote myself a list of cleaning chores recently because I've been in a deep depression and have no energy so need it broken down, so I'm not being patronising here), and maybe big family gatherings are just too much,

My sister has a mental illness that disrupted my entire family for years in our teens, so I do have sympathy for the OP as it is hard being the sibling and screaming at my mum to do something that was impossible.

No one here can say which/if any of his behaviours are caused by asd or made worse by asd or just typical teenage traits. Plus, even neurotypical adults all have some undesirable characteristics and behaviours. You, your parents, and your brother are the ones best placed to know and to help him.

Nope you're not. I'm 32 and my DB is 28 & has Asperger's. Be prepared for a whole life of it.

People forget that you can have Asperger's and be a dick head at the same time.

Thanks for posting Helen.

That was a great post nickifury. I read about the research on the low life expectancy of adults with Autism this year - ("Certain groups of autistic people die 30 years younger than their peers, say charity Autistica,") and had a good long think on the stress for people on the spectrum trying to fit into an NT world (because it is an NT world).

www.theguardian.com/science/2016/mar/18/premature-autism-deaths-are-hidden-crisis-says-charity

I switched to exactly your kind of approach and it's done wonders for my son's wellbeing, state of mind and behaviour.

Wannabe with respect having autism is very different, parents tend to work very hard on coping skills in their children because otherwise their own lives are hellish

There is an element of that for sure, fanjo, but that's hardly the main or only reason. We want to help our children to become functional, independent adults, too.

Yes I'm sure everyone wants that for their child. Not all can achieve it though.

And if you can't it's not because you have given up either.

Of course aspie children/teens/adults have to learn how to survive and look after themselves as best as possible, BUT this will be at their own pace, and probably a lot slower/later than NT children/teens/adults. Some need supported accomodation. It is up to your brother and parents to work that out.

All people are different. All learn at a different pace. All have skills they pick up quickly while others they struggle with. It is part of life, along with the sibling rivalry and its not fairness.