Help needed please.

We have an adult son who we think may well be autistic. We are in the process of trying to get a diagnosis. Over the years we have noticed so many things but overlooked it as in the main his behaviours are similar to most of us; and we are all somewhere on the spectrum, right?

Why I say we need help, is because we want him to be able to help himself in certain things and to understand that we believe small tweaks to his habits and behaviours will help him massively. We might be wrong, but we want him to try and see if things improve for him. For example, he will do something in a certain way, which takes a long time. To help explain what I mean, when he was younger he had a paper round. He would start at No 1, then cross the road and do No 2, then cross back, do No 3, cross back and do No 4 etc all the way up to 106. He would be crossing back and forth all the way taking more than twice as long to do the road, than if he just started at No 1, did all the odds and cross once and do all the evens. We explained this and he seemed to agree and understand, but then continued to do it his way. We tried to explain that doing it in this way was taking him nearly 3 times longer to do that same task than someone else. He agreed, or at least seemed to agree. We asked him to just try it our way so he could see for himself the difference and if he still wanted to do it his way, great, but then he should understand that people may think that was inefficient, eg a future employer.

Another example is his parking of his car. So we live in a road where we have some parking bays on one side and none on the other. When he parks he drives in face forward and straight into a parking bay. No issue really with that. The problem is that when our neighbours opposite arrive on the none bay side they just park on the road in front of their houses. This now makes reversing his car out much much harder. I have suggested to him that when he arrives to reverse park into the bay, so that when he wants to drive out and our neighbour’s cars are opposite he can easily manoeuvre his car straight out. He finds reverse parking easy to do and agrees that the driving straight out is also much easier, yet he still parks face forward and then struggles with trying to get his car out when the neighbours have parked up.

I guess what I am asking is that despite his agreeing with us, he still practices the ‘inefficient’ or ‘difficult’ option and there are so so many examples. We need help in maybe explaining it so that he genuinely does understand, as it seems that he is just agreeing and then doing his own thing. It is so so frustrating. It causes arguments and we so so desperately want to help him but equally want him to help himself. It almost feels like he nods, but doesn’t actually get what we are saying, so we need to say it differently, maybe.

Anyways, any help welcome. Sorry to go on...

  • Numbers are counted 1 to 100, so he delivers his papers that way.

    He probably does that round thinking to himself, what sort of numpty designed this street in such an illogical way that the numbers are not next to each other.  But the inability to adapt to the situation seems to be strong in him.  I was pretty inflexible as a child, but with time I learnt to adapt, improvise, overcome.  The gifts I was given make it so easy to do that, but you have to learn to embrace them.  I no longer see problems per se, I see challenges that need solutions finding.  But I wasnt always this way.  When I was younger well it was a bad time.  But you have to go through those sometimes to move on in life.

  • You are welcome. My youngest daughter who is 9 has Autism and everyday is a learning journey. She was officially diagnosed at the age of 7 but the diagnosis process started when she was 4. I knew from I'd say around 18 months old that she had Autism. I could see similar traits in her that I remembered my brother having when he was little besides a few other things. 

    Something to remember is Autism is a spectrum, not one child with Autism is the same. I did an 8 week course and you learnt different techniques for dealing with different behaviours etc, but what works for one child doesn't work for another or could work for a time but then doesn't. All we can do as parents is try everything we can to help our children to make life easier for them. 

    There are some great online resources to help you, even being on here is great being able to get advice from other people who have lived and experienced Autism.

    I believe that we have to get the world to fit our children, not our children to fit this world. 

  • Thank you. You are right. I am seeing it so much better now that I am speaking with people who are themselves autistic in some way or who have better understanding and experience and I in dealing with the situations as they arise.

    Within a day or so I have learned so much. Thank you.

  • I suspect that's it, no-one learns to juggle without dropping the ball. Also fears are contagious, there is so much fear in world culture surrounding autism that it's very hard not to get swept up in that.

    If that last bit resonates with you at all (I'm not sure) it may help to follow youtube channels by other adult autistics

    https://www.youtube.com/channel/UC-FpBZR7DbpvNj5UrFN8qUA

    https://www.youtube.com/channel/UCk5aCrQAppGZ8atiOpgYZ1A

    • To a person with Autism things are black or white, theres no inbetween.  An Autistic persons brain is turned up completely different to that of someone who doesn't have Autism. What makes no sense to you, makes perfect sense to them and is logical. Numbers are counted 1 to 100, so he delivers his papers that way. We dont count in 2's from 1-99 and then 2 up to 100, so to your son it makes no sense to deliver papers that way. With alot of things, it's more that we need to change our behaviours to help people with Autism,  not try to change them and their behaviour. Its alot easier to change our behaviour. Plus who gets to decide whose way is correct anyway??? Its always assumed the one with the Disability is wrong....... maybe we are the ones doing things wrong. 
  • Hi xiv

    Thank you. You know, I’m so so glad I joined this group. You have all very quickly made me see where the problem lies; it’s with me and not him.

    I need to learn to wait and see if he asks for help, and then give my best advice and leave him to it.

    I have definitely experienced the polite listening and know he has ‘switched off’ and as I now realise, if someone was constantly on at me, I would probably switch off too (and maybe not be as polite as he is).

    I feel like I may have pushed him away, and I pray that is not the case. I love him with all my heart.

    I will follow the advice you have all given.

    Please pray for us. Thank you.

  • I do think that is the key to help him achieve that, if he asks you for advice on how to do something different or more efficient then fire away he will be all ears and engaged in what you are saying as it’s come from him.

    I find for me regardless to the intentions unless I have asked for the help or it’s clear to see I am struggling (if he’s anything like me I really don’t like to struggle so will do what I can to find a solution anyway and at least can see where the advice is coming from or why you are getting it) than for someone to just suggest any advice I will be thinking ..why is there something wrong with what I’m doing. It’s hard to work out the difference in the moment and maybe after it will sit with him and he may think about what you have said but I know for me I’m quite stubborn and unless I felt like I wanted or needed help I struggle to take it well.

    It’s hard with him being an adult as he will want to have even more of that element of control on what he does or wants to do. It shouldn’t bother you more than it does him and as long as your there for him when he wants and needs your guidance and support then you can’t go too wrong :) 

  • Hi

    please don’t take offence to what I’m putting as I know I sometimes type things that may seem rude but not intended. Whilst reading what you wrote I was getting frustrated on your sons behalf, it’s like you always no best. 

    yes it does make sense to do all the odds and then evens but there maybe another reason your son does it that way. Why fix something that’s not broken. Re the car he probably just drives in as it’s just the easy option and he probably isn’t thinking. I know this is just two examples but if you always know best your son will have just switched off to you and will be saying yes just to be polite but not actually listening.

    i know your probably trying to help but maybe if you just left him to it he would work out for himself it’s quicker or easier to do somethings a certain way. If he is old enough to drive he doesn’t need his mum mothering him.

    I do things in such a way that may seem strange to others but to me it works, we are all different after all. Try not to worry about your son he may just surprise you. I failed everything at school, my social skills are non existent but I’ve managed to get my own house, live independently and not rely on anybody. I think I have surprised my parents as I don’t think they thought I’d do well and used to always say “ how do you keep a job when you do x or god knows how they put up with you at work”

    Also we are not all a little bit on the spectrum, I don’t think you meant any offence though . If I had a £1 for everytime I’d heard that 

  • Thank you. I hear you guys loud and clear. Our input really isn’t meant as a criticism; we are genuinely trying to help, but I understand that if he is receiving it as a criticism, how that is no incentive to take on board what we say.

    We love him so much and he is so so intelligent, able, capable and can achieve so much. I just want him to max out his opportunities,fulfil his potential.

    I am understanding so much more now that part of helping him in achieving more is in allowing him to flourish his way.

    Thank you.  

  • I don’t know if your son is similar to me but I do tend to find other inputs or ideas that would make things more efficient a bit of an attack/criticism even if it isn’t meant to be or even if the advice is better than the way i am doing it. I find it difficult to see it as someone trying to make it easier for me and more that it’s a criticism of the way I am doing it. 
    We soon learn if our way doesn’t work or what needs tweaking just like everyone else but if my way works for me and doesn’t really affect anyone then what’s the harm? Say for instance with the paper round if he didn’t feel a time pressure and was happy to do it the way he was or maybe even was happier spending the time out on his own doing the route and that’s an excuse to make it a bit longer and do it at his own pace, or he just found it amusing to do it in order. If he wanted to get them done faster or knew it was a problem or wrong to do it the way he did then he would learn for himself and work out what he wants to do instead. 
    I get the parking... we have neighbours who have 2 sons both parking where they like in the road and not in actual spaces and I guess the frustrating thing for your son is that he shouldn’t have to change the way he parks because of how others do.. I find this quite a pattern for me if I feel I am allowed to do what I am doing then I shouldn’t have to change that for the convenience of others... but then I’m not one for the confrontation that would bring either so I would rather park at the end of my road instead of trying to struggle getting out of the road because of someone else’s parking. 

    just being there for him is the main thing, we all have to learn either way and it’s not fun feeling like people want to chime in on how you do things if it doesn’t actually cause you a problem.

  • Thank you. I wish you well too.

    Everyone’s comments have helped. I am realising very quickly that I have a lot to learn and a lot more questions to ask. Pray you guys are able to help us.

    Thank you so much.

  • Thank you for your reply, and for explaining, despite being upset with me. I appreciate that.

    The oil tanker taking miles to change course makes so much sense. Really opened my eyes.

    We do ask why he does certain things in certain ways, but he is unable to explain. I personally tend to have a very logical approach to things and he does not, that’s where we clash. I really want to understand his thinking processes so we can help him and present things so they are easier for him to grasp. This is a massive challenge. What do you suggest we do to overcome this?

    Thank you again.

  • Thank you. I think I understand. I get that the change needs to come from him, if at all. We need to give him time. Is that what you are saying?

    I see what you say about ‘living his own life’ vs ‘giving control of his life to others’.

    We so desperately what him to be independent and I guess it is because we worry that he will not cope in certain situations, but I think I am realising that we need to let go and let him create his own life experiences; good or bad.

    Am I getting it, or have I missed the point?

  • Wow. Ok, so I am so so sorry for upsetting anyone. That was certainly not what I intended. Aidie, please forgive me, and indeed anyone else, who may have got upset.

    ** Hangs head in shame **

    I have learned something and will not make that same mistake again. Apologies.

  • I see what you mean.  I haven't been formerly diagnosed in America.   I am 52 and the guidelines here must prove Rainman crippling disability prior to 18...so they come up with all sorts of diagnosis instead.  It is possible I suppose my father really did have just brain damage as my grandmother said and that was why he was harnessed for his safety as a child.  It is possible the 3 PhD's who cleared me for SRS surgery under HBS and my success living not as the gender I was born for 23 years was not a success either given one doctor in one visit declared an Axis II when I asked about ASD after I lost a 27 year profession..but I don't think so.  I think getting an accurate diagnosis is important.  I resisted the idea because clearly I wasn't like Rainman.  I didn't make it 27 years in medicine by making clinical judgement errors.  I asked the doctor about ASD after I was fired., She diagnosed that as no, you don't have classic autism, you are crazy and all your surgeries 23 years ago were a mistake. I never said my surgeries were a mistake...she did.  I said they were the best decisions that had ever been made.  The medical doctor said because I was crazy I couldn't judge my life as a success.  I saw her after I was terminated from a 27 year career which I only knew how to do one way.  The way I was trained.   If your son has autistic traits that border into disorder, let him experience the real world if he can't face it yet.  His parents protecting him further disables him but he may not be ready to hear ASD.  I was trained in a 2 year medical profession...A mentor saw my difficulties in school and tailored a way to do my job that worked 27 years.  An interesting thing happened one evening as I was trying to bill in a timely manner.  The superviser was an occupational therapist and she watched me.  "No wonder you take so long!"  Then she showed me a better way.  The reality is I was probably an undiagnosed ASD but an occupational therapist spotted what you are describing.  I hated my parents as a teenager because I was struggling so much and there was just no reason I was thinking of suicide in highschool because of the difficulty I had.  "You just aren't applying yourself."  I would give all I had at a task and it didn't measure up against the standard.  Over correction of "This is how you should do it," just increased depression. Conformity means also time efficient.  I agreed to let the supervisor show me a more time efficient way because of carrot and stick.  I was born to do the job I did and I at least gave a fair measure to her suggestion and saw that it was better.  There may be something in your son that makes him resistant OR he doesn't have enough life experiences yet to understand the way he is problem solving is not "Normal."  Behavior modification does apply to us because we don't want to fail.   I barely graduated...My parents realized something after graduation when my college entrance scores were so low the only thing that saved me was my History knowledge.  My parents paid for 7 years of college and allowed me to audit classes with videos I could watch at home, tutors and study guides.  I got a 27 year career out of that.  I was fired when productivity standards rose in writing last year.  I was not time efficient.  There was not more in my gas tank to give.  My father too was about to be fired for the same thing and he came out on early retirement because he could not keep up at 58...  He was prone to explosions when tasks exceeded his capability.  We live in a world that is time efficient.  We figure out a way to get a job done because we are resourceful and creative but if your son had to problem solve to achieve a task in a certain way, he is trying as hard as he can.  Depending on his age, and if he is over 12 hearing it from parents is not the same as a mentor.   I don't know if the sensory and communication deficits are there for your son?  In America in an adult speech delay has to be proven or it isn't autism.  All those crippling disabilities that professionals classify as autism must follow a very strict guideline for a clinical diagnosis and in America they aren't looking for autistic traits or a spectrum prior to age 18.  They look only for crippling classic autism disability.  I was not aware when I spoke with my doctor last year MOST of the people saying they have ASD are self diagnosed.  My 78 year old father knew we were different and he tried to help.  He spoke about 7 pages of autistic traits that set me apart from other kids to a medical center... "Nope, that just makes you different, we need disability" 

    My mothers karma was that she lived with my father resenting my grandmother for trying to explain dad's difference as brain damage.  By the time she had her stroke, she had to admit...yep, probably brain damage after all.  My mother trained me that one NEVER asks for help, shows they need help and above all else, be normal.  She was dirt poor, no running water or electricity, last of 9 and too proud to eat government paid school lunches.  Mom was really afraid I was not endowed with the survival skills others had to make it out in the real world.  I did, until I couldn't anymore.

    Maybe your son needs to experience some hard life lessons and find him a mentor in an area that he is interested in.  Follow Temple Grandin's mom's flow chart.  If it is ASD and he is a teenager, remember we are not comfortable with change.  I have  experience in horsemanship and the best approach to horsemanship or an ASD teenager is allow them to discover it for themselves...the why's or the "this is how I want to do it."   A good horseman automatically sets their horse up to succeed in participation.  It becomes both the horses idea and the horseman.  My mother began to set things up for me when I turned 18 because she saw I was clueless...but I was giving everything I had. "I just don't know how you are gonna make it out there?"  She is dead now.   I was a psychology major with a semester left to be trained in a two year caring profession.  Now, my successes, publications in NIH.gov mean nothing to doctors here in CA without a formal diagnosis... I will be on the street soon.  I don't feel safe to return to live with my father because he lives in new town in the deep south where people found out about my gender issue.  Turns out other people who knew me growing up moved to the same town and they knew he only had one child and that child was a daughter...not a son.  They didn't just whisper about it, they let my dad know they knew and they felt it was wrong.  People like that can do mean things besides just talk.  If you suspect ASD, it won't go away.  If there are too many stressors at one time, we explode much quicker than a normal neurotypical will do.  If your son is ASD, it just about automatically qualifies him as a good person.  One evening when I visited my father I watched his process for entering his property with a locked gait.  He went back and forth.  I asked him if he ever considered taking out a step or two?  He said this was how he remembered it and no, he wasn't interested in learning a better way.  We have those steps and processes so we remember and don't get distracted.  He was 72 then, already retired.  It worked for him...but on his job, his methods didn't meet time crunches.  He was smart.  He was a mechanical crew chief to keep helicopters flying for Medivac under Big Red One in Vietnam.  NO mechanical failures but no one sat on him for a more time efficient way of keeping birds in the air.  If it is ASD, there are other traits besides problem solving as others do and efficiency.  That is just one aspect of ASD.  Don't know if any of my experiences helped but best to your family and good luck.

  • autistic people do things differently  which sometimes discovers new ways of doing things ------ i can see he is following the number line and ignores the logically the higher view you see. He may really like numbers.  The car thing, i would do the same as him  and i dont know why, a sort of impatience to get in the door home. Autustics make up their own minds and when we do we are like a hugh oil tanker that takes miles to change course/ or stop. In scientific research we quite often follow a path all the way to a discovery irrespectiful of what other researchers are doing. In a way it works and in a way it doesnt.  Keep explaining he's not ignoring you not at all. He inputs what u say and then re-decides himself to follow a pattern.  Sit back and watch his beauty who else would do that ?

    ask him why he does it his way in detail  --- it could be the direction he approaches houses.  He may not like to walk past windows a sort of anti-rudeness 'proper ways of doing things'  rule I have many of those :)

    my nephew ( more autistic than me )  can spent all day on a single joint when making a table and would not listen to me about spending too much time making a table ( ie it would cost too much ).  But over 2 years he has gradually improved by using machinery to get the same perfection he wants quicker.. 

    I love my different way of thinking !

  • if u want to upset someone on the spectrum just say " we are all somewhere on the spectrum, right? "  many auties find it upsetting. 

  • To explain the spectrum thing, it doesn't work that way. To use an ad-hoc analogy, Citrus fruit is a spectrum, Banana's share some traits with citrus fruit i.e. seeds on the inside but they are not on the citrus spectrum. It's called a spectrum because not all citrus fruits are the same.

    I doubt this is a lack of understanding on his part, more a lack of reasons. Changing habits/ways of thinking can require more effort for us, depending on age and life experience I'd say he'll adjust once he experiences real life reason to be more efficient. This has to be from his experience, not something that can be taught.

    The more you try to force change, the more his subconscious will resist. On a subconscious level he probably sees this as living his own life, or giving control of his life to others.