Hi I am a mum and my adult son has aspergers

Thankyou for your post - it has really helped from a parent's perspective to understand the experience of how  life is from the aspect of one with Aspergers and their experience growing up. My adult son is now 33 years and was diagnosed with Aspergers at 19. It has been very challenging for us from his birth until now and also for him having to face reality from a different perspective and having always been misunderstood as a schoolboy by teachers, peers and yes sometimes his parents.  As parents we are naturally protective over our children and only ever want what is best even though we may not fully understand what that may be.  Due to lack of support and the skills needed to enable to deal with situations, we try to cope and manage them in our own way which often ends up being more destructive than constructive but unintentional.  At times parents find themselves overwhelmed, drained of energy and at a loss resulting in unfavourable reactions.  Please understand, although not right when we reach breaking point and say things we later regret, our reactions are due to constantly having to pace ourselves and at times we just run out of stamina and crash, but I , like I am sure most parents, always make sure that my son knows he is loved by way of display and affirmation.  We as parents must keep seeking and striving for ways to help our children find their way in this already challenging world as well as find help for ourselves to cope and manage in a way that we can all live in harmony and happiness. Sometimes a wake up call is needed such as your post to bring you back to reality and making some adjustments.  Thank you again :)

Thank you Narra. Your post is reassuring. Unfortunately my son doesn't seem to have the high intelligence part of Aspergers. I believe his IQ is only about 85. I have tried to give him the bits of paper/qualifications in things that he can do, like powerboat licence etc. he isnt ashamed of his diagnosis and we had to tell him to stop giving out his 'I have Aspergers' cards and told him to only use them when you felt threatened or in trouble. This came from a minor incident with the police that could have been bigger if someone hadn't intervened and said he isn't being rude, he has Aspergers! 

you are right in that interviews aren't great for him but the one where we had bad feedback was over 2 days, doing activities etc. it was the kind of interview where I thought they could see through his issues and he could show what he can do.

He has had another interview today with another place. It was the more traditional type of interview but the college had done more last minute prep with him. He only holds most information for a short period and questions about 'how you might react in a certain scenario' are impossible for him.

i will let you know how things go, but it helps to write it down and know someone out there is listening to me. 

Mary, 

The description of your son exactly mirrors my life at 20 although it was the Sir Winston Churchill and the Malcolm Miller which I sailed on and I only then had single GCE 'O' level in physics!

40 years on I have a grown up family, an MSc in Environmental Science, two charted qualification including a Charter Fellowship and I have a senior management position within a FTSE 250 company leading a professional discipline.

If I were to write a letter to my younger self which I see in your son, it would that I must take ownership of my autism and learn about the workings of a neuro-typical mind and how my mind works.  I would also tell myself that process of growing up does take much longer, it is far bumpier, but it is worth it in the end as you are in much more powerful position because of the special talents which you are blessed with and these did not surface till my later 20s!

Job interview are not necessary the best vehicle for an autistic person as these are just beauty contests where we are often seen as the ugly duckling.  If your son has survived at collage with his day to day living arrangements, then he has done well and although he may appear to be making small steps, these will get larger and at some stage I am sure that he will even surprise you which my own autistic son has already done.

My son has Aspergers. He was diagnosed when he was 8 and he is now 20. He attended a British mainstream school in Spain. At the age of 16 he took 6 GCSE but got 1. it was then that I felt that the school couldn't really cater for him. So I took him out of school and basically home schooled him, with a weekly tutor to guide and help us along the way. At the age of 18 he finally had 4 GCSEs. This meant he could get his ESO and Spanish school leaving certificate.

During the holiday times he also sailed on the Lord Nelson, gained his RYA competent crew and powerboat licence. His biggest achievement was his dive master. He has since been at college in the UK doing a BTEC course in Sport and Outdoor Adventure. He has been at this residential college for the last 2 years, coming home every 6 weeks for 2 weeks. He has managed to cope with day to day living, arranging his week, getting up for college, getting girlfriends, organising his washing etc.

He has only managed to get these qualifications with me in the background, teaching, guiding, re writing, discussing, getting his ideas and thoughts and writing it down for him.  He can do all these things but cannot verbalise or write spontaneously. 

Im now trying to get him an apprenticeship in outdoor adventure. I hoped that this would be a gentle way to give him the confidence and experience until he would finally be able to be an instructor within a supportive team.

But I now feel that all my help, support, work is useless. I can help him write a CV, talk through the job, practice interview questions and send him off for the interview. Then he is on his own. I know he has to do this on his own and I want him to get a position on his own merits. 

But but the latest feedback from an interview was not good and, I suppose reminded me of his problems. He follows instructions well but can't think outside the box. If he was told to keep,an eye on a problem diver, walker within the group, etc he would, but ignore the others. He doesn't have the common sense needed. 

Im now feeling lost, very alone and scared for our future. My husband has had recent heart problems and so I cannot rely on him for support. I can't pass on the stress to him but I have no one to turn to. My friends children are all finishing college and everyone is delighting in their results. I am happy for them but feel very alone. 

My son finishes college this week and I am frightened on what our life will be like. 

I am new to the community and  I've been searching for others in a similar situation to mine. I know this is an old post but I can relate to Islas story. My son too had a late diagnoses and has only  recently been  diagnosed At the age of 20. He is now 21. To cut a long story short he developed severe anxiety at the age of 14 and struggled through school and college. He eventually gave up college at the age of 19 and failed to find a permanent job. His mental health has gradually deteriorated since then.  he started spending all of his days performing rituals and routines and would not engage in any conversation or activity other than his rituals. Eventually he stopped looking after himself and had not washed at all for a whole year.  Neither did he change his clothes or under wear, wash his teeth or shave. He also had control issues around eating and was loosing weight. He was 9 and a half stone and is 6 ft tall. we eventually had him assessed under the mental health act and he is now living in a care home for young people. i tried everything in my power to help him.  My son too is in denial about his diagnoses and thinks that his behaviour is perfectly normal. I would love to be able to let my son make his own decisions and learn from his mistakes but sometimes you have to do what is best for them. He hates it in the home but would be at risk of severe self neglect without support from care staff and family. 

Thank you so much for your excellent reply.  I have read the document you kindly attached and it will use the information there.  The man in question has been fully diagnosed and informed.  However, he refuses to accept any of this and will not allow any assistance to be given to him.  We are told that until he will co-operate with the professionals there is nothing more they can do and neither can we.  I met with him yesterday, however, and was happy to see an improvement in him and he wanted to discuss the ways in which he can interact with others.  This suggests to me that he is beginning to accept that he has problems.  I dearly hope so because I believe this is an important step forward.  Hopefully we can build on this.  I really do appreciate all he help and advice I have received so far.  I believe we can do much more in time.

Kindest,  Isla

AspieMom said:

My son was diagnosed too late for us. His life was full of every kind of diagnosis - mild tourettes, ADD, oppositional defiant disorder, dysgraphia... He was picked on by other kids and teachers as well. He had so much trouble in his teen years that he decided he must be in the wrong body. He is now taking hormones to become half man and half woman. He wants to appear as a woman but be neither. This is a very troubling turn of events and I am appalled that a medical doctor is going along with it. He has had only 4 months of therapy focused on transgender - which he admits he is not. I am actually seeing a trend in kids, possibly most of them with Asperger's,  choosing to be transgender or 'genderqueer' - a term they have made up as far as I can tell. My son has cut himself off from his family and lives with a group of other messed up and confused young adults. I would appreciate any ideas for how to reach him and stop him from destroying his body. We are devasted that we did not identify his Asperger's at a younger age where we could help him cope with it.

Though his lifestyle is extreme, do you think he will abandon it and return to you if you are going to tell him how to live his life. I left the family home and lived with a (differently) messed up group of teens (untill they kicked me out for non-conformity (amazing from a group of non-conformists) purely to escape parental authority. Keep the pressure on him and he will entrench his position, back off and he might find enough wriggle room to escape a situation he may well be finding a bit pointy already.

Isla,

your partner's son needs help from adult mental health services. Outraged is right that Aspergers not being an illness but the other disorders are real illnesses and the adult mental health people should be able to unravel the consequential disorders from the Aspergers and be able to assist him with managing life with an understanding of what the Aspergers means. It is common for undiagnosed, and diagnosed, aspies to suffer from all sorts of disorders such as depression and these can often be treated much more successfully if the underlying Aspergers is identified.

In Bristol we have www.awp.nhs.uk/.../ there may be something similar in your area.

Thank you for your advice.  You are right.  He must avoid street wandering and spend more time immersing himself in his interests.  I will pass this to him (worded in a diplomatic way, of course).  If you think of anything more that will help I would be grateful for your comments.

Take care,

Isla

That first line should read:

"My partner's son has finally been diagnosed with Aspergers and several mental illnesses."

He needs to find his interests and involve himself in them so as to avoid (potentially risky) street wandering and to alleviate his stress before it becomes overwhelming.

My partner's son has finally been diagnosed with Aspergers and several other mental illnesses.  He is a 36 year old highly qualified engineer who cannot now work and is wandering the streets aimlessly.  We are both terribly worried about him but don't know how to help.  It appears that I am the only person he can talk to.  I remain quiet and listen to him, allowing him to try to tell me about his attempts to connect with people.  He simply can't express himself but somehow I do understand him.  He wants to live in my home where he feels nurtured but he has an explosive temper which he cannot control.  This has led to him destroying many valuable and cherished family antiques and, I believe, that it was he who injured our cat.  He will not accept that there is anything wrong with him even though he has no friends and has been dismissed from his last two jobs.  His father has done all he can but this is now upsetting him to the point of illness.  Is there anyone who can give me information on what to do next?

Hi AspieMom,

You're welcome to start another conversation topic about your son if you'd wish to discuss your situation further as a seperate topic. 

Lady P,

If he doesn't want to have the label and think of himself as an aspie then that is his choice. I have chosen to get a diagnosis and I am entirely comfortable with it but we are all different. At 21 he is an adult and should be making his own choices - even if they are sometimes bad ones that you disapprove of. I only got diagnosed at 56 when I needed to work out what I was doing wrong. Diagnosis has been liberating but also scary and not without a few more bumps along the road.

I have two sons, in their twenties, and I have learnt that you have to let them fly on their own wings and make their own way in the world. It is sometimes difficult to see them making mistakes and getting hurt but you have to let it happen. They have rebelled and it has not been plain sailing but they have now (eventually!) turned into really nice people that want to come home at the weekends for dinner and be best friends for us.

What you can do is be there for him when he wants help, look for the positives and cherish him for his talents. You can try and understand him and work out what he likes and what bugs him - give him some peace and quiet and space to relax.

The GP can't do anything magical, this isn't a medical disease after all - there are lots of threads in these forums where they haven't been able to contribute much.

Longman I agree that there is not enough discussion about autism and being ***, gay bisexual or transgender. We do young people a disservice by not airing this subject. Researchers may shy away because while it is now socially acceptable to be gay and no longer something to be cured, you can't say the same of autism. They are still trying to cure us and keep trying to work out what went wrong to make us this way.

Aspiemom you can't beat yourself up because your son wasn't diagnosed earlier. You can honour his choices and his solutions. All his life he has felt different and not felt accepted, all AS people know that ever-present feeling. If he is happy now surely you must be happy for him. Accept what he has chosen for himself, show him you love and value him and he may resume contact with you. His body is his to do with as he chooses, if you express revulsion at his choices you will only drive him further away.

As a further point, however difficult it may seem, you may be better able to support your son if you accept his current friendships.

Young people challenging sexual identities are often tougher than you might imagine, and more open to differences between people, which may be part of the attraction.

Understanding the culture he is in may be more productive than fighting it.

Also being accepted in a group is important where autism is concerned. It may be easier to socialise and converse with other members of such a group. If you fight it, what you are taking away is probably the only successful social context he has ever had. This acceptance may be strengthening him and helping him cope better in other ways.

I appreciate the difficulty presented by his pursuing having physical changes made, but I think the way forward is to "go with the flow" to some extent.

Is there another way of describing this group he has become involved with as "other messed up and confused young adults"? They might be so, but on closer examination it is more likely they are above average better adjusted, more mature and more in control than you think. Rebellious undoubtedly, flaunting convention, but not necessarily "messed up" or "confused".

Sexual ambiguity/confusion seems to be fairly common with autism. The trouble is it just doesn't get discussed - British reserve or somesuch nonsense - so there is very little information around about this phenomena.

Lack of social skills and therefore limited social contact may be a factor by denying young people on the spectrum from peer identity reinforcement. Ordinarily young people's sexual identities are very strongly moulded by the crowd they mix with, and in the ordinary way of things a group of macho young lads will all turn out the same. To be different you'd have to make a really big step, which is obviously traumatic for someone definately transgender or definately gay, who realise they cannot conform.

To be different, even in what seems a more tolerant generation, is still really difficult, and ridicule and bullying around sexual difference is very harsh.

Trouble is children on the spectrum get bullied anyway, and are more likely to identify with other excluded minorities, whether that's goths, or emos, or often computer geeks, or also gay or transgender.

I don't think genderqueer or any other such cultures are at all new - they probably get more media visibility now. Young people have experimented with this for generations, just it had to be more covert and was much more risky. Some stayed there, for others it was a passing phase. You may be seeing this side of things more because your son has got involved with that crowd. Some parents get to see a lot of goth culture, because that seems an option for some kids with autism to find greater acceptance.

But I do stress the importance of sexual ambiguity on the spectrum, and I wish NAS would take this seriously. If the subject gets mentioned on here, the thread ends abrubtly in a deathly hush. As will no doubt be what happens after this posting!

The facts (where you can find any facts) suggest young people with autism are something like six times more likely to identify gay. They are also more likely to have gender identification difficulties.

But it never gets discussed. What's wrong with parents out there? If you really care about your children on the autistic spectrum why must you constantly pretend this isn't there? A lot of kids on the spectrum suffer added torment from sexual identity confusion, and all they get is its a taboo subject. It is a shocking state of affairs that we are too coy in this country to give proper help to young people in such difficulties.

However if your son clearly identifies this ambiguity, that he isn't transgender but needs to make physical changes, you have to accept that may be what works for him. You need to be supportive however bizarre this may seem. Stopping him could make things worse. You just have to understand that sexual ambiguity is a very real autism phenomena that affects many people.

Until NAS and other autism groups take this issue seriously there isn't going to be any advice around.

My son was diagnosed too late for us. His life was full of every kind of diagnosis - mild tourettes, ADD, oppositional defiant disorder, dysgraphia... He was picked on by other kids and teachers as well. He had so much trouble in his teen years that he decided he must be in the wrong body. He is now taking hormones to become half man and half woman. He wants to appear as a woman but be neither. This is a very troubling turn of events and I am appalled that a medical doctor is going along with it. He has had only 4 months of therapy focused on transgender - which he admits he is not. I am actually seeing a trend in kids, possibly most of them with Asperger's,  choosing to be transgender or 'genderqueer' - a term they have made up as far as I can tell. My son has cut himself off from his family and lives with a group of other messed up and confused young adults. I would appreciate any ideas for how to reach him and stop him from destroying his body. We are devasted that we did not identify his Asperger's at a younger age where we could help him cope with it.

Lady P,

From my own experience as someone with ASD learning to grow up and thrive as an adult can take much longer than someone on the neurotypical spectrum and I do understand why you are concerned.

As a NAS member, one of my aims is to show that there are many of us with autism who are in stable relationships and have developed successful careers, (albeit that the path is often much more bumpy).  I myself have a senior management role in a large construction organisation and married with a son at university who also has ASD!

It is only recently that I have discovered that I have aspergers and why I was finding it so difficult to behave in a neurotypical way.  Having a diagnosis does enable me to retain a neurotypical alter-ego for work etc, whilst giving me time-out opportunities away from the stresses of NT world.

As I recently put it in an e-mail. “I strongly feel that it is important to show autism in a positive way, especially in front of those members with higher functioning autistic children and to act as an ambassador for those who are following, however in many ways I do feel privileged in being on the spectrum”!

Thank you for your responses. I hope you get support for you son Anita so that he can live independently. Like you I worry what will happen when I am not here to  support and just hope that we have built up our son's confidence enough to be independent. Thank you to Hope and others. One thing I had never realised or recognised is how tiring aspergers is for those who have the condition. And hands up I have just thought it was laziness. How wrong was I?? I now know why my son loves to come home relaxes in a warm bath for hours, followed by a lengthy snooze in his old  room.  I am glad we help him to unwind. 

Hi anita,

I have Aspergers and also live in a housing association flat. I get 11 hours of support a week from my local autism charity. They help me with shopping, cooking, managing bills, housework etc. I visit my parents at the weekends, which helps me to unwind because taking care of myself is tiring.

Does your son get support? If not, this might be worth pursuing. You can request a community care assessment for him.

Maybe he could decrease the amount of time he spends with you, step by step, until he is more comfortable on his own?