The information contained here comes from personal experience and is a guide to those who suspect that their child may have an autistic spectrum disorder or A.S.D.
As someone who has had practical experience, gone through the pitfalls of diagnosis and living with a child with Asperger’s, I hope that this might help others with their journey.
Daniel is now a 16 year old adolescent with Asperger’s syndrome. He was formally diagnosed in 2004 at the age of 10. In my experience, the journey to diagnosis and living with a child with this condition is fraught with many difficulties. I will not kid you that the journey ahead is easy but the process is worthwhile in the long run.
Daniel’s example – the early years
Daniel always lacked attention. He always seemed to be in his own world. He was an imaginative child but didn’t appear to ‘play’ with his toys, as any other conventional child seemed to. He would be more inclined to break his toys and didn’t seem to want to explore them. I can remember trying to encourage him to play, as he didn’t seem well motivated in this.
When he started to talk, his first words were ‘car’ and not ‘dad’. He was a ‘good’ baby and toddler and rarely cried compared to others. However, it always seemed that he had to be taught and spoon-fed information. He never really explored activities or enquired and was slow to understand social norms. It was very obvious from an early age that Daniel lived in the here and now and could not predict the consequences of his actions.
Daniel was obsessed with certain things. He used to dress up as anything - Darth Vader, a policeman, a fireman. You might think that this is normal for a young child, but for Daniel it was an obsessional behaviour. Nothing else could distract him from this task. He used to spin, flicking his fingers and hum tunes that he associated with the uniform.
He also had little interaction with other children. He was a solitary child and, although, there were plenty of opportunities that I had provided for him, he rarely interacted. He was also very clumsy and would be unaware of the space he occupied. It transpired that Daniel had glue ear, so the initial thought was that this was the cause to his lack of attention or attention deficit.
It wasn’t until I was studying for my Honours in Psychology, that Asperger’s Syndrome was brought to my attention. The condition, I learned, was categorized under the umbrella known as Autistic Spectrum Disorders.
Asperger’s Syndrome Signs and Symptoms:
This list is not exclusive. Children may display a cross range of symptoms - some more or less. This is why Asperger’s Syndrome is classified as a ‘spectrum’ disorder because the child displays symptoms from aspects of the whole autistic spectrum. It is a disorder because the signs and symptoms deviate away from what the clinicians deem as the norm.
Children with Asperger’s Syndrome may have specific learning difficulties, for example, symptoms of:
- Dysphagia – a disability that affects movement, coordination and awareness of space. Seems clumsy.and disorganised.
- Obsessional Behaviour - for example, appearing stuck in a particular activity. In Daniel's case, he would escape in a world of dressing up. Essentially, seeking roles in subjects that immersed him. Being Darth Vader, a policeman or James Bond took him into an activity that he could relate to and construct situations that he could be in control of.
- Overly Organised - a contradiction, in Daniel's case because he had problems in sequencing. Some children with Asperger's Syndrome, however, are the opposite but similar to Daniel. They may display behaviour and become obsessive in organising the world around them. They may get upset if things are out of place, for example, and are fixed in their behaviour. The commonality, however, is that this is about controlling an environment that in their mind, is out of control. It feels safe in a world of confusing signals to act in this way and Daniel's coping mechanism was through imaginative play where he could control the outcome. In short, these children like to predict and control their environments.
- A Specialist Subject - Some children may excel in a particular talent. Daniel, for example, gets immerse in exploring through books the world. However, because he has problems with organisation, many projects are started but not seen through.
- Loneliness - .They find difficulties in socialisation which inevitably leads to social isolation. They find it hard to give eye contact, are vulnerable to scams because they don't understand social ques and can not decipher what people are actually saying to them by their body language. As a result, this can lead to outcomes that are both upsetting and confusing. They may show signs of violence which does not correspond to the true intention of others who are not on the spectrum. For ease, I term people as 'normals' because they find reading others as natural.
Summary By The National Autistic Society - The Official Line
‘It seems likely that most children with Asperger syndrome experience poor co-ordination and difficulties with fine motor control.’ The National Autistic Society
- Dysphasia – speech disorders, semantics and expression of language
- Attention Deficit Hyperactivity Disorder – the inability to keep to task, easily distracted and chaotic in their behaviour.
- A child with this form of autism will have an I.Q. (Intelligence Quotient) as average and above. This is the high functioning aspect of AS.
- They may find social communication difficult. Body language, social queues and knowing when to respond verbally in discussions (how to intervene, initiate and interact in a social context). They may take things literally and find jokes hard to understand. For example a saying like ‘one man’s meat is another man’s poison’ for someone with Asperger’s is a very bizarre notion.
- They find socialising difficult. They have to learn to interact with others whereas most people take this for granted – this is natural for most but unnatural for AS. Establishing and maintaining friendships is hard. They are able enough to know they are different so get frustrated and anxious.
- They may have difficulties in ‘reading’ other people – their motives, their responses and make predictions based on their actions.
- They may be limited in their range of imaginative activities. As a result, whatever their interest may lead to some obsessional behaviour. It is not unheard of if they are over particular about certain things. Daniel’s example of his obsession of uniforms demonstrates this.
- Most are not very adaptable to change. They like structure and feel safe in this. It might be because they feel chaotic, confused and disorganised. Control in a world that is confusing is comforting.
- They might have heightened sensitivity to the senses. Sounds might appear louder, smells may be more acute and touch may be annoying for example. Daniel has a habit of smelling drinking glasses and refuses to use these as he reports them having a strange smell. He, therefore, always drinks from a tap.
- They may appear disorganised, suffer short-term memory loss and be confused in new settings.
Diagnosis of Asperger's Syndrome
- It is unlikely that Asperger’s syndrome will be diagnosed before school age:
‘Some diagnosticians are clearly of the view that Asperger syndrome cannot be diagnosed before a child starts school.’ Source: Click ‘The National Autistic Society’ at the end of this article.
The reason for this is that it is thought that social skills may not have been fully developed at this point. This is because of the lack of exposure to social settings prior to starting school.
In the case of Daniel, despite an extensive assessment with the Occupational Therapy and Speech and Language Departments, it resulted in there not being enough evidence for diagnosis. Any diagnosis and difficulties he displayed appeared very ‘grey’. We were, therefore, advised to wait.
Daniel was also suffering from deafness due to his glue ear and this confused matters further as it could have had an impact in delayed development. Daniel’s example, therefore, exemplifies that diagnosis.
- Boys are more likely to have Asperger’s Syndrome than girls.
There is a new train of thought that boys are easier to diagnose than girls. It is still generally thought of as more of a boy’s condition, however, there are resources out there that can help from the likes of Tony Attwood, Rudy Simone and Shana Nichols - all of which are highly recommended reading.
There are lots of problems associated with diagnosis. I was lucky to have been studying Psychology when Daniel’s difficulties finally hit me. I, essentially, had diagnosed him initially just by being armed with the facts. If you are reading this, you either have an interest in this subject or you may have some concerns over a loved one. Whatever the reason, you are arming yourself with essential information. It is important, therefore, to get as much information as you can. Make notes and correlate what you know of your child’s behaviour with the information you have gathered.
This is a good step for empowering yourself before you visit your Doctor and it will show him/she that you have been concerned enough to have done your homework. Once you have convinced the Doctor, request a referral to an Asperger’s Syndrome specialist. This might be a paediatric, psychiatrist or clinical psychologist. I was very lucky; I managed to get the support of my Doctor who referred Daniel to a speech and language therapist and a clinical psychologist.
This was because, at the time, Daniel had further complications with glue ear and I had a fight on my hands with his school – they didn’t understand his needs. They thought he was a bad boy who needed a behaviourist to develop behaviour modification programmes. Despite his later diagnosis, they still did not accept this so, get the Doctor to make a referral to various agencies, predominantly a paediatric, psychiatrist or clinical psychologists. A team on your side can help. If you still have problems, take the private option and pay for an assessment.
On-going support - Ask for more!
Daniel has had on-going support from the clinical psychologist. The diagnosis has helped with him gain additional support at his secondary school and has helped professionals understand how Daniel operates. It has saved him from being permanently excluded from school. Daniel’s behaviour hasn’t been acceptable because he has problems with social interaction.
This has led to being bullied but also bullying because he just doesn’t ‘get it!’ The frustration that he has can lead to aggression because that is what he sees in others. Again, problems in perceiving and reading others.
In The Words of The Specialist...
Diagnosis – is it worth it?
In my experience it is. Daniel has additional government funding in order to help him over come his condition. It gives him an understanding into who he is and helps him to see Asperger’s in a positive light.
However, labelling someone may be deemed as disabling in the social world, but without the label he is without the help. What you need to ask yourself is which is the better out of the two evils? Going through life, lonely and scared or an awareness and understanding of your difficulties?
Being armed with education and skills to develop coping mechanisms within a very confusing world is the payoff for a label in a prejudice world. Whatever way you look at it, an AS child will always appear different within this prejudice world with or without a label!
© This work is covered under Creative Commons License
© 2009 shazwellyn
shazwellyn (author) from Great Britain on January 02, 2013:
Charlene - ADHD is part of the autistic spectrum (ASD). It is these individual components/highlights that make Asperger's so individual. Your idea of an amazing talent - one for which you take for granted - and the onlookers in your lives would have too totally different perspectives. Making patterns with coins is certainly different and amazing!
Charlene on December 30, 2012:
I think I have it. I am outgoing but have no real friends except my husband. I am often in a dream state. I was diagnosed at 23 with ADHD but I think there's more to it. I find it easier to write my thoughts than saying them. I do stuff for no particular reason like making patterns with coins. I don't have any obsessions or any amazing talent. My IQ is average with genius in certain areas and retarded in other areas. I believe my autism is due to environmental factors. I was in an orphanage at a young age. My two biggest problems are social interaction and acting my age.
shazwellyn (author) from Great Britain on September 22, 2012:
FrancesG - I am afraid you are in a no win situation. If you hadn't intervened then he would be blaming you for not helping him to go on meds. This is because he is finding a reason for his feelings. People with Asperger's are notorious for seeking blame outside of themselves. This is about a lack of empathy and only seeing one view point when the challenge to him is to start looking at how he can be his best. Once he starts taking responsibility for his own life, he would have cracked it and learned to overcome, on a conscious level, asperger's syndrome.
All you can do is ask yourself: 'Did I do my best to help him be his best with good intentions?' If the answer is yes, then you have nothing to feel guilty for.
I wish you well. I wish you happiness. I wish you peace.
FrancesG on September 10, 2012:
I tried to get my son help since he was first told he needed evaluation at age 3, as the pre-school couldn't handle him. As his journey unfolded, he had a lot of anger and felt alienated and depressed. By 4th grade, the teacher said he needed counseling for anger management. By 8th grade, we had him attend counseling regularly, and begin medication in 9th grade. Now 3 years later, he blames me for taking him all over for help and not letting him lay in bed and look at the computer all day. His behavior escalated and I tried an intervention to a program, which he refused, Now he lives alone at a college apartment. He stopped taking his meds now and blames me that I had taken him to a psychiatrist who gave him med. I feel helpless and very sad, but at least we have peace in our house, as it was chaotic before, with him verbally abusing me and his sister.
shazwellyn (author) from Great Britain on June 25, 2012:
thewritingowl - I wonder if you would identify with my article about Asperger girls and undiagnosed ASD females? It would be interesting to see your take on this!
Mary Kelly Godley from Ireland on June 24, 2012:
Speaking from the perspective of a woman who was only diagnosed with AS at 38 I would say the 'label,' is a must. I knew I was different and I believe was just so much harder because I don't know why and I blamed myself because I assumed my difference was due to some deficit on my part. I think it would have been so much more beneficial to me to have known as a child, teenager and young adult that my brain was just wired differently and that there was an explanation for how I felt. Thanks for your article I liked it.
shazwellyn (author) from Great Britain on April 17, 2012:
Hi Jackie, of course nothing is every clear cut - as you have demonstrated. All I can say is keep trying, however difficult it is, there are times... well you know those rewarding times when you think you just are making a bit more of a breakthrough... just keep you going.
My other son added type 1 diabetes into the mix, so I do know the knife edge you follow.
My thoughts are with you and I pray that a way will be found to help you to better times.
Jackie on April 17, 2012:
Thank you Shaz. It has been a rollercoaster here, more downs than up unfortunately. Now our child hates us, has assumed a new name, created new relatives and wants nothing to do with us, other than use us as human punch bags. Schools can't cope, she can't cope in schools. The list goes on, but we love her dearly and will persevere. She has the additional needs of epilepsy and profoundly deaf, so everything is much harder. Thank you for your words
shazwellyn (author) from Great Britain on April 09, 2012:
Hi Jackie. Please don't be sad, take this as a start of a journey to helping you all to be the best you can be. Once you have identified ASD, there are lots of things that you can do to nurture a child with this. Please have hope because there is lots that people with Asperger's can offer society, you just have to find your child's niche and direct it into a positive way.
There are geniuses in the world with ASD who contribute in a big way to society... Einstein, Freud - to name but two, so don't dispare. You have a special child who needs to be treated in a special way! :)
Jackie on April 08, 2012:
Your article made me cry. I felt you were writing about my life, my child
shazwellyn (author) from Great Britain on April 02, 2012:
Have you thought about looking into MRI scanning? This is a new technology that can identify autism. https://hubpages.com/health/Autistic-Spectrum-Diso...
It might also be useful going to a clinical Psychologist for councilling - both of you could attend. It might help to establish exactly what is going on and help with a formal diagnostic.
How is his language development? Perhaps a further assessment with a speech and language therapist?
Try and get an assessment with the Educational Psychologist, too.
The key is to get as much information as possible. Bring the evidence together and create your own assessment based on the reports of 'the Professionals'. I wrote an article on how to create an assessment (the example is about housing, but you can use this template for your son's case). It will help put your facts together in an order that will represent their assessments - remember these Professionals are busy and often cut corners, so correlate the information for them!
I know this is hard work for you, but those who are supposed to serve you will serve those who push the greatest.
Here is the assessment link that will help you as an example of how to provide an assessment report: https://hubpages.com/politics/Social-Housing-Affor...
Now, write the following headings:
Under each heading, corrulate the evidence you have obtained from each professional.
At the end, write what you suspect but are looking for a formal diagnosis to help you get what your son needs to reach his full potential. Forward this report to all those that have been involved and follow up with a call.
I hope this will help you,
LaShan,DC on April 01, 2012:
I'm going craxy with my 14 year old son. I have had drs. looking at him since, he was in 1st grade and he has been put out of school since he was in 1st grade and still getting put out of school in the 9th grade. Teachers, Principals and psychologist have not been able to label him or find out what is wrong with him. I try to be patient with him but at times I go over the cliff and loose my patients. I love my son and I don't know what to do to save him. He goes from 1 to 100 in aseconds with anger. He does not give u eye contact. It's like he's lost and not here. He can't communicate or relate what was told to him. He can't follow directions. It's hard for him to stay on track.
shazwellyn (author) from Great Britain on March 19, 2012:
Frank... thank you for reading. There could be other issues going on which may not be Asperger's syndrome. He may have questions to who he is, for example, and may be confused in his identity. What is for sure, something is bugging him and it could be he is just working through it.
The anger he displays about his personal life, might have something to do with your preconceived ideas of 'normal' which he might deviate from. Perhaps the best course of action is to let him know that whatever he is, you still love him - he is your son. Maybe he might feel confident enough to open up to you.
Having said all this, it is you that have to go through his difficult behaviour - it just seems that the 'virtual' world in the form of his xbox seems to provide an escape from the cause and troubles which are worrying him. All u can do is love him and pick him up should he fall.
Sorry I cant be of any more help :)
frank on March 19, 2012:
my son is 27 and i don't know if he has aspergers or is extremely shy.He has had 1 girfriend in his life for a couple of months at uni.Apart from the girlfriend he made no other friends the entire period at university.He looks the other direction when he passes neighbours in the street.When he comes in from work he goes straight upstairs to play his xbox and spends just about every waking minute of the day and weekends playing it.The only conversation he has with me or his mother is HELLO and CHEERIO going to and from work.The odd time he goes out with 1 of his few friends and we ask him if he met any girls he starts getting angry with us and says its none of our business.My wife seems quite happy with the situation but he just doesn't seem to have much of a future in front of him.
shazwellyn (author) from Great Britain on February 26, 2012:
Elvisa - I am so happy that you are chipping away at the system. You are doing all the right things - just keep focused and keep on the right side of the ego's of those sensitive professionals. Tell them how you value their help and are grateful for how quickly they are doing things - you will be amazed how far this strategy will get you! Remember you are dealing with people here and a little bit of gratitude goes a long way! You all want to do the best for your son - he is the centre of care and it is for people like him that the professionals went into this line of work in the first place.
Keep being the best you can be and all will work out well.
Elvisa on February 26, 2012:
Thany you Shazwellyn, I am still awaiting progress from the referal I put into doctor. The school have also put a referal in aswell since the ISP meeting. It is such a long proccess, been told 6mths + just for to get first initial appointment. But I am doing what you said and trying to empower myself by researching as much as I can about aspergers. I am aslo keeping a diary of his behaviour,home/school link books etc, so that I go to first appointment prepared. It is so good to come on this site and see that I am not alone. Feeling more positive about the future for my son now, and also finding new strategie's that I can use to help him, and to help me understand how best to help him and manage his behaviour's. Thanks again, and wish everyone luck xxx
shazwellyn (author) from Great Britain on February 19, 2012:
Hi KD. You are very lucky that these days there is a lot more awareness on Aspergers Syndrome. As a result, there is a lot more information 'out there' and you can be empowered. You are also lucky that he has been picked up, by you, at such a young stage - the sooner you realise, the better the coping mechanisms of people with ASD - you can put self help programmes in force. They have to learn social skills 'consciously' rather than something that comes naturally.
Start off by doing what you are doing... internet information and go to forums to ask for help from others. You are now well on the way to being empowered!
Seek out a formal diagnosis (this may be difficult because Clinical Psychologists tend not diagnose a youngester as young as your son is) but don't dispair - crack on getting the evidence... speech and language therapist, behaviour modification specialist... just keep on the case! Keep all assessments made - you will need this in the future.
Primarily, however, check to see that he isn't suffering from deafness or anything else 'physical'. You need to tick the boxes!
I hope this helps and I wish you luck!
k d on February 15, 2012:
Hi, My son is 5 and reading about your early years for your son describes my son to a T! He is currently undergoing assessment but chances of being diagnosed look slim, any advice you could offer would be helpful and much appreciated x
Patty Inglish MS from USA and Asgardia, the First Space Nation on February 09, 2012:
I agree and also think that parents have been more on top of ASD and ways to manage that really work - much more than healthcare professions have ever been. I bookmarked this Hub!
shazwellyn (author) from Great Britain on February 09, 2012:
Thank you Patty. There are lots of cuts here in the UK. I think the DIY is about empowerment, don't you think? We want to do the best for people and because ASD is so diverse and individual, care plans are time consuming to construct and implement. This, of course, costs money. Cost containment, just by definition, means that it is only used as a crisis intervention.
Empowering people with the necessary skills and coping strategies is about prevention. It is a shame, therefore, that the lack of funding leads to crisis when a small injection of money could prevent such costly interventions.
In the UK, we call this 'penny wise, pound foolish'.
Thanks for reading:)
Patty Inglish MS from USA and Asgardia, the First Space Nation on February 09, 2012:
This is one mental health diagnosis that I am happy people are discussing, because the American Psychiatric Assn. is narrowing the definition of Autism Spectrum Disorders as a whole for the upcoming DSM V (unless there is a miracle intervention), which will cut out a lot of help people on the spectrum can receive from agencies that will lose funding because of the changes. SSDI income will be cut off for some recipients as well.
I think that, to an extent, all the "autisms" are becoming DIY in terms of diagnosis and treatment among the public. It's not fair, but American parents and parent groups are very sharp in their knowledge and handling of the autisms. I know little about the system yet in UK and Australia, but will learn.
Some of my favorite people have Asperger's.
shazwellyn (author) from Great Britain on February 09, 2012:
dazzlejazz... look for the genius in him, he has something that is unique and of real use to society. Good luck and thank you for reading :)
dazzlejazz from Down under on February 08, 2012:
This is an excellent article on the subject of AS - certainly, the more information that gets out there about it the better!
I have a loved one who has not as yet been diagnosed but we have our suspicions that he is an 'aspie' kid.
shazwellyn (author) from Great Britain on January 31, 2012:
Hi Elvisa, it might be best that you did seek a label - get a formal assessment completed by a clinical psychologist... it is better to know what you are dealing with so as you can help your son reach his full potential. Autistic spectrum disorders are very individual - there is never two that are the same - although there are common traits that help to identify what makes them fearful and their view on the world around them. A diagnosis normally comes with a good care plan full of practical tips in empowering those with and those who care for them.
You have to look after you as well, Elivsa, so it would be helpful if you joined a group or forum for carers of people with ASD. Just Google your local area and see what is around.
Hope this is a good start for you. The only way now is up! Be positive and know that there are people out there who know what you are going through.
Elvisa on January 29, 2012:
I suspect that my son (he is 6) might have aspergers.
he has no friends, he is constantly having aggressive outburts at school, home and at the childminders. He has not been able to spend a whole day in school, without me having to be called to pick him up as his behaviour is so bad. He has probs with spacial awarness. When he talks about feelings, he describes them as normal when he doesn't mind something. Seems very dreamy at times, like he is in his own world. Doesn't like certaine materials on his clothes( like the prints of brands)Certaine noises, he doesn't like people to stand/sit too close to him.
I have to admit for me the aggressive behaviour is what I am finding the hardest... his school are looking at setting up an isp. they are currently using strategies that they would use for children on the autistic spectrum.
been to docs who have refered him to pediatric clinic...but I feel the help and support needed at this time just isn't there till you have a label..... I feel worried, helpless and don't know where to turn now... can anybody help please.
shazwellyn (author) from Great Britain on January 09, 2012:
Thank you Carol. There seems to be lots of issues over lablels, but if we didn't have names for people or things, how can we communicate effectively as human beings? How would we imagine a person that wasn't labelled 'female', 'male', 'brown hair', 'blue eyes'? Labels are a necessary evil because we have not evolved telepathy or tranferance of thoughts, feelings and symbols from our minds (although, some might debate this - lol). Wouldn't life be so much easier if we did, eh? However, for the time being, we have to just make do with verbal communication and label things.
Aspie, aspergers, pergers, spie's, whatever, we are all individuals and we need to celebrate this individuality with a little help from our friends!
Carol - Aspie Sibling on January 09, 2012:
Great Stuff shazwellyn - there's such a huge information deficit that needs to be addressed about Asperger's Syndrome. Good, detailed material like this can help to overcome that. It's important to remember that a diagnosis should not be treated as a label. It gives you access to a formal lexicon of terminology that helps in interacting with medical and educational professionals, but it should never pigeon-hole your Aspie.
shazwellyn (author) from Great Britain on November 23, 2011:
maxywoo - brilliant summary. *wink*.. you need to add genius in specialist field though.
maxywoo on November 23, 2011:
i've had a couple of autistic friends (well more aquantances) in primary and high school and i have really learned about how they act and what they do. If your wondering whether you have it or not, here's some signs:-
.constantly following people around and not giving them their space.
.anger problems (on some occasions)
.odd facts that you may come out with (people may find them pointless or boring)
.OCD (obssesive compulsive disorder)
.overeactions about little things
shazwellyn (author) from Great Britain on November 13, 2011:
Hi tmom. Aspergers is a very personal and individual condition. This is why the professionals use the label 'Autistic SPECTRUM Disorder' because each person has individualised characteristics. For example, my son is totally disorganised - he has problems with order and sequencing, whereas another, is obsessed with perfect order and might even show signs of Obsessive Compulsive Disorder.
Now, it seems that the condition in my son 'worsened' whereas, I don't think this was the case at all - it was just that the signs became more apparent and easier to identify compared to the behaviours of his peers. His teachers defined him as being 'an enigma'. He was one on his own and it was as if he was caught between two worlds - dreamy and misunderstood by his view of others and those in his environment.
When he became a teenager, we had the 'normal' pain of adolesence mixed with ASD. This is a cocktail for extreme difficulties, compounded by hormonal changes where even those without asd suffer confusion, isolation and great wraths of anger vs love. This is a very difficult time for those with Aspergers, as you can imagine! However, the research suggests that by the age of 21 years, they do start 'normalising' (whatever normal is, eh?!) and coping with life better.
Daniel is difficult, but we have been lucky enough to have support in a specialist further educational residential college that specialises in Aspergers. He is making steady progress and has found his niche 'genius' - he is part of a record company run by the industry in a college setting. This has been great for his self esteem as he loves what he creates. The other issues are there, but we are all helping him to work on this.
The story isn't over yet *wink*, and neither is yours! Lets just love them and pick them up when they fall - just like when they were learning to walk :)
shazwellyn (author) from Great Britain on November 13, 2011:
Hi Pongo. You know, being Asperger's can be a very positive thing. These people have genius within them. It might be best to tackle the subject in a positive way - there are lots of work out there for these people. They are special and appreciated for their skills. Diagnosis is only an aid to access to services. This is specialist education to help with socialisation. People with ASD have to learn to deal with relationships and it is this that is of concern. ASD is not a disease, it can be a blessing :)
tmom on November 11, 2011:
I suspect my son has AS. He's 8 now and in 3rd grade. I knew my son was 'different' from other kids but until I came upon an article on Asperger I didn't know what to call it. Since then I've been reading more and want to get him to the right doctor for testing. I want to know as a parent how to deal with him as I can see how frustrated he gets sometimes. He's into video games and can name all the characters of the show Naruto. I mean, details here on each episode. He has a hard time socializing and wants to be with people that makes him feel comfortable which means he's by himself at school alot. Overall he's a happy kid but I am concerned for his future. As in the case of your son, does the condition worsen as he got older?
Pongo on November 09, 2011:
I'm almost certain my best friend (16) has AS. I know his parents (who are also friends with my parents) think this as well. I have believed this for a while, but I never really worried about it, because most of the things I was used to and could handle, and didn't affect him too much, but in the last two years things have changed. I've herd that AS symptoms sometimes get worse during puberty, and I think that's what's up. They have begun to affect him a lot more, both in how he interacts with others and how he deals with things himself. Also, he has started lashing out at me. I think his parents think, and I did think up until recently that it would be best not to worry about a diagnoses because noting had been too severe and it would be best not to label him, but now I'm thinking that it might be better that he is, because then he could get help, and it could be explained to people why he sometimes acts the way he does. What I am wondering is if there is a way to go about diagnosis that will not cause him to lash out or become depressed, if and how we might be able to talk about the issue with his parents sensitively?
shazwellyn (author) from Great Britain on November 09, 2011:
mom - did you know that you can have mri tests which shows up the way his brain is wired compared to the 'normals' of the world? It might be worth investigating. Check out my hub on this!
mom on November 08, 2011:
I've thought my son was an aspie, but all the tests he took said he was very depressed. Not wanting to hurt his feelings again I haven't brought it up. Now he is almost 18 and he is a train wreck. He is having OCD symptons washing his hands and just doesn't understand things like not walking around with his fly open, or why he has to go to sleep to get to school on time the next morning. He doesn't care that he has bad acne on his face. And doesn't think his OCD is a problem. He writes beautiful music and taught himself the guitar, but wont let us listen to it. He is so smart I thing he fooled the psychologists that have spoken to him. I see him having a hard life if he doesn't get the right help.
shazwellyn (author) from Great Britain on September 07, 2011:
Rubi B - My story is your story - verbatim (except I am good at creative writing and had 'normal' vocab)! AS is a label to describe your individuality. The fascinating, but confusing thing about Aspergers, is that each person is very different in presenting the signs. Have you read my article on Asperger Girls ( I assume you are a girl, right?)? This might help.
I can not help ask myself what a label ('Aspergers') can do to change things. A formal diagnosis is just that. You are what you are and need to love you for this. If you are on the spectrum, love what you CAN do and UNDERSTAND what you can't. You are the empowerer of your life, so learn all that you can that brings you joy and 'manage' what doesn't.
Aspie girls are reknowned for people who can 'fake' social interaction for short periods, but to understand this is a great way to cope and manage it.
I wish you a wonderful journey to self discovery!
Rubi B. on September 07, 2011:
Im 19 and have always believed i might have autism or asperger's, i have poor memory, and am told by my mother i did not start to speak until i was around 5 or 6, i had very intense tantrums as a kid and when i learned to speak i had a very limited vocabulary, i've displayed high artist ability when i was in 2nd grade and had always found it difficult to socialize with people. I have never been diagnosed, but this is fairly new so i don't think i would have been diagnosed. When i entered middle school i became very promiscuous and in 9th grade i became somewhat of a loner. By the time i graduated from high school i was way more social, but looking back i think some of my behavior was artificial, i didn't get jokes as easy and whenever i tried to tell a joke it was dead silence. I find that with my family i feel more myself. After graduating i've become more of my old self again, when i go out with my friends i find myself faking smiles, i don't know why. I don't know if its because of AS or maybe im just weird. I would just like to know if anyone else feels the same.
shazwellyn (author) from Great Britain on April 03, 2011:
Bless you Rebecca!
Rebecca E. from Canada on March 19, 2011:
as always well done, and happy to read this, makes a lot of sense, and you've got a knack for writing well.
shazwellyn (author) from Great Britain on October 19, 2010:
LittleSuell - hope it was helpful to you!
LittleSueII on October 18, 2010:
shazwellyn (author) from Great Britain on August 14, 2010:
Thank you Aiden - Im glad it has been of help :)
Aiden Roberts from United Kingdom on August 13, 2010:
shazwellyn (author) from Great Britain on July 27, 2010:
Nice you dropped by infonolan :)
infonolan on July 25, 2010:
Here's some good info on gluten free diets if you need it:
shazwellyn (author) from Great Britain on July 20, 2010:
This is difficult Tammy. However, it is worth remembering that after the age of 21, they start normalising. A formal diagnosis might be helpful, but even if you have an informal diagnosis, you at least know what you are dealing with in order to help him.
There is lots of information and advice around that is free. This could form the basis of self help. If you know you have social problems, you are more open to learning how to develop coping mechanisms to help in those awkward situations. You know, it is alright to be a social isolate and it is socially acceptable to say that one is not comfortable with group participation!
The point is... is he happy? Does he get himself in trouble? Whatever his 'social failings' are, teach him to help himself find a way to make things better when those situations come up again in life.
I hope this makes sense! Don't be afraid of Asperger's syndrome - celebrate its uniqueness and complexities that can be so creative. Support his difficulties, but allow him room to grow.
Tammy on July 14, 2010:
My son is 19 and has meny of the symptoms and has been going for therapy for aprox 3 years with a Registered Social Work Intern when my son turned 19 she told him she belived his diagnosis was aspergers now we have no insurance because he has aged out and because he is an adult I get no information or feed back from therpist he can no longer go to not because of lack of insurance he is in college doing well highly intelligent. I don't know what to do or just to leave it alone or if her diagnosis can stand up since she is an intern??I don't know what to do or as I said just wait and see?
shazwellyn (author) from Great Britain on July 07, 2010:
Thanks for reading Billy - yes, it is very difficult for someone with Asperger's syndrome to be in the limelight. Greenwood of Radiohead is an example of someone with the condition that finds performing particulary difficult. He seems to hide himself under his mop of hair and concentrates on the music rather than the environment.
Thanks for reading :)
billyaustindillon on July 07, 2010:
Great hub - a few years ago I met the leader singer of the Vines after one of the gigs he was extremely agitated and the performance had it's moments. I read a few years later he was diagnosed with Asperger's and the band eventually broke up. Made a lot of sense and I think a lot of people eat their words about him and his behavior.
shazwellyn (author) from Great Britain on June 28, 2010:
Bailey... you are caught between the devil and the deep blue sea with labelling issues. Dan had a hang up because he was labelled... however, without the label I have no doubt Dan would have been on the scrap heap by now. He would be on a slippery route to self destruction and crime - getting involved with bad peers and being led astray.
The path is hard with asperger's both for the carers and the person with the condition. Being armed with information is the key to success - keep strong.
Girls are better at faking socialisation... but you know the reasons why in my other hubs :)
Baileybear on June 22, 2010:
I remember watching my sister-in-law (who disowned me) criticise someone (as she always does). I noticed she always curled her top lip at the side showing her teeth. I looked it up and it said her body language was showing contempt, disgust etc. I can hear tone of voice but my son can't. I asked the mother of an Asperger child if I would have learnt that or always been like that, and she said I would have learnt it, but girls often pick up enough to get by, sort of.
We decided to get a formal label for our son, as he was getting labelled anyway as difficult child etc. School are being more understanding now
shazwellyn (author) from Great Britain on June 22, 2010:
Baileybear... I just sooo know where you are on this! Asperger's women are intriged by why people behave in the way they do... because 'behaviour' sometimes doesn't seem logical or predictable, so we look for commonalities in order to predict and make sense of the situation.
I was watching Big Brother and my thoughts were 'God, the relationship thing is just too much! Who needs that sort of stress?'... sometimes it is easier and less complicated just to be alone. But then... I am an undiagnosed Aspie! lol
Baileybear on June 22, 2010:
I figured out my son had Asperger's too (and I do too, but milder). Then armed with evidence, had it rubberstamped by the professionals. I am drawn to psychology too, because people intrigue me but baffle me with their behaviours
shazwellyn (author) from Great Britain on March 19, 2010:
You are a thoughtful person Justine... email me anytime! x
Justine76 on March 19, 2010:
hahaha, I am sorry about my typos. I didn't even see that until just now. I meant to say "about it"...
yeah, I intend to show this to my friend next time I see her. Thanks again.
shazwellyn (author) from Great Britain on March 18, 2010:
Justine - I am glad that it has helped. Maybe you could send them this article - they shouldn't feel alone in this.
Thanks for commenting and taking a look:)
Justine76 on March 18, 2010:
Well, sorry it took me so long but I finally made it over here. I think I told you this before, but I have a very good friend whos son is 16 and he was diagnosed with aspergers when he was 8 or 9. Its been VERY difficult for them. this was so neatly written, adn very good information. Thanks for tellgi me aobu tit. :)
shazwellyn (author) from Great Britain on December 24, 2009:
@kaloomba. You are absolutely right about the generations that have been lost or without a diagnosis. I have to admit to you, that I am one of those. I know that I have had classic symptoms ... my husband is one too, my father and his father as well. As a child, I was in a perpeptual dream state, I couldn't read unti the age of 10, failed my 11+ at 11, then passed with distinction at 12 - work that one out! I have an i.q. of 138, but am clumsy and stupid in many ways (spelling, rote learning, time keeping etc).
My husband and I are both quite quirkey. We seem to compensate each others inadequacies and compliment each other. I studied psychology.. do you know why? Because I just couldn't understand people! Studying in an academic way is very 'logical', don't you think? For years I wondered what was wrong with me and why people didn't like me. Through a degree via distance learning (we are social isolates and don't get on too well in a classroom setting - typical!), I found peace. I understand what was wrong (or right?) with me.
Breaking the Asperger's cycle in my family, with diagnosis of my son, I hope may help and overcome problems. Of course, the hang up he has now is 'stereotyping and labelling' issues! In every positive situation, there is always a counter balance,however, weighing up diagnosis vs problems with labelling, I think the additional help gives him an informed choice and support he wouldn't have without the diagnosis.
For me? Without the diagnosis, I suffered sexual abuse, rape, broken heart etc. If I was taught on a conscious level, what was right and wrong, perhaps I wouldn't have had to suffer as I did. I hope my son doesn't have to go through the same as I. It is through hardship and pain that I had to learn the hard way. We are the lost generations, but now there is hope for those that have been found! x
kaloomba on December 24, 2009:
Being a Special Ed teacher I am finding that nearly ALL of the information out there on ASD (Autism Spectrum Disorder) and many other related disorders are geared toward children.
I realize that most of this information is just now coming to light, so discussions regarding adults that have never been diagnosed as a child haven't started yet.
However, since I have an older sibling with obvious signs and behaviours, and also know other adults that I recognize as having symptoms and behaviours (but the general population see them only as strange, mean, etc.), I question as to how the field of medicine intends to deal with this emerging situation.
I could write many stories of how these undiagnosed adults seriously (and negatively) affected others around them, due to my own personal experiences with having everything from a boss with VERY obvious signs of Paranoid Schizophrenia, to my sister's obvious signs of ASD.