Aspergers??

[momtoall4]

My now almost 12 year old has always been a bit different. In preschool I questioned why he didnt play with the other children, but they said it was wonderful that he could play by himself. In early elementary years he was "independent but unfocused".

He has gone to school with the same kids for 7 years but can only tell you the names of a few. He has one friend, and gets picked on and made fun of daily. He has gotten so used to it that he only mentions it if I ask him directly if anything bad happened, then he gets so upset telling me that he cant speak. I go to the teachers time and time again with little to no results. We even pulled him out and homeschooled him for a year, but he wanted to go back and so he could make new friends....guess how that turned out. He wants so badly to have friends, it just breaks my heart to watch him struggle. Through all of it he has remained such a sweet boy. He is so gentle with babies, he loves to look at their tiny hands and feet...of course he also catalogs all of their tiny parts verbally while he holds them...Look at his tiny eyes, his tiny nose, his tiny mouth...you get the idea.

We have been through the standard diagnoses...ADD, anxiety disorder, mild depression. We had an assessment with a therapist that decided  I made my son so nervous that he couldn't function around me.....what???? This man met my son 3 times for one hour sessions and all they talked about was astronomy....for 3 hours....that doesn't seem odd??

The more I read about Asperger's Syndrome, the more I see my son in the symptoms. Social ineptness, fixating on a topic, poor handwriting, not picking up on facial cues, poor motor skills, we even put a sign on the bathroom mirror to remind him of what he is supposed to be doing in there (brush your teeth, comb your hair, etc..)

One of his quirks is his need for physical contact, he will be walking down the aisle in the grocery with me, and just start rubbing his face against my arm like a cat. He seems to need the skin to skin contact when he is overwhelmed, I think maybe the lights and so many people when we are shopping is just too much for him. He asks if we can shop at the supercenter in town, they have an electronics section where he can play video games while I shop and that seems to help.



So I guess my question is, does this sound like Asperger's to anyone but me...and if it does, now that he is nearly 12, how do I go about getting him tested/diagnosed so the school will finally stop calling me a neurotic mom and start helping my child.

Thank you for any advice you have to offer...

[SueNYC]

Get a neuropsych - never a total positive but they can kind of rule it out.

[Rach67]

It does sound like Aspergers - I don't know what requirements the American education system has for diagnosis.  Here in Australia schools can refer children to a Ed. Dept pychologist for assessment (long wait), but for the Federal Governments requirements to be registered as "disabled" you need a Paediatricians diagnosis.

Can you ask the local Autistic soceity which proffessionals are most knowledgable about Aspergers, to save banging your head against a brick wall?

My son has the same high need to have physical contact - he is playing Rugby Union which involves lots of physical contact and rough play, which he loves, and as he is quite athletic he is more accepeted because of his sporting abilities than he would be otherwise.  He finds school quite difficult though, and sometime s gets very upset that other sports don't have the same rules as Rugby!!

You are on the right track with lists, that is what our Paediatrician and Pychologist have recommended we do with our son, and we have a detailed list of household responsibilites / roster, for which both my children earn raffle tickets (points) for which they exchange for items they want - you can add things like "having a freind over", "playing board game" to the list of rewards they can exchange for points.  It is saving us a lot of stress.

It does tear at your heart when they become so distressed about the social isolation.  We try and have freinds over regularly, so that he can play one on one with the kids rather than in a group, which is what he can't cope with.  Then he has some connection with those kids when he is back at school.  Hosting (small) birthday partys helps too, cause then you get to meet the kids parents, if you want them to come over for play dates - BBQ's at a playground are fairly easy, then they are playing alongside each other rather than having to cooperate in party games.

My son is having CBT with a pych, for which we are eligble for Govt assistance because of his diagnosis, and that is helping with the social stuff, he is being allowed to join in the group games at lunch time now.  Again, don't know what help you can get in the US, but I am sure contacting your local Autism support network will help there too.  I have found our group here to be wonderful help, and so good to talk with someone who has been there too.

Good luck and remember, Bill Gates is probably an Aspie (me too, and I am running a business now).  Its not all negative, especially if you can get support for the areas that cause distress.

Cheers,

Rachel

[mtgoat911]

great post rach!! you are right it is not all negative!!

[Sally44]

My understanding is that there are two ways of approaching a diagnosis.  One is through the educational system and one is through the health system.  The one that carries the greater weight is through the health system.  So you need to go to your local doctor and tell them that you suspect your son has Aspergers and that you want him to be assessed by a multi disciplinary team that has experience and expertise in diagnosing autistic spectrum disorders, including Aspergers.
This usually involves a clinical psychologist, educational psychologist, paediatrician, occupational therapist, speech and language therapist etc.
If you want to look at the diagnostic criteria for Aspergers google 'DSM IV Aspergers' and it will list the kind of behaviours the professionals are looking for.  No-one will exhibit all the behaviours, but you have to have a set number of them eg. 2 out of 6 etc.
If you click on the Health Page icon on the top right hand corner of this forum page, then go into The Behavioural Characteristics behind a diagnosis of ASDs.  I have posted the DSM IV criteria for autism and aspergers there.  Parents have also posted examples of their child's behaviour that meets the criteria.  This should give you an idea of what the professionals are looking for when they observe a child/adult.
Although your child is talking, do you suspect he has any language processing problems?  Does he take language literally.  Can he understand humour?  Does he appear naive and gullable?  Any language processing or literal/concrete thinking etc should be assessed and addressed by a Speech and Language Therapist.  
In the UK the SALT is also responsible for dealing with any social communication or behavioural difficulties.  This may be things like how to hold a two way conversation.  How to make friends.  All kinds of life skills etc.  A programme should be put together by a SALT that has experience of ASDs.  Schools that have alot of experience of children with Aspergers and high functioning autistics may also have social communication programmes that the children can go to and learn social skills in small groups.  But in a typical mainstream school this may not be available.
Get in touch with the Autistic Society of America and find out about support groups in your local area.  Go along and meet other families as this will give your son opportunities to socialise with other children who have similar interests and difficulties.  You can also get information from those parents about which schools they are sending their children to and why.  You tend to find a cluster of Aspergers children all in one school simply because they have the knowledge and the programmes to help them.  No school is really going to put the effort in for just one child.  They don't have the time or interest.  Autism and Aspergers is a complicated disorder that affects each child differently.  You really do need staff that have experience of children on the spectrum.
You also mention sensory differences.  If you google the name Olga Bogdashina and read an article by her in autism today this may give you a much better understanding of how your son receives, processes and interprets sensory information.  There is alot that can be done to reduce over stimulation and to teach the child how to recognise their sensory state and take action to withdraw or calm themselves down.  An Occupational Therapist should be able to help with a programme for this and again it should be one that has experience of ASDs.  Your son may also have difficulties with writing, gross motor skills, balance etc.  Again an OT should assess this.
You also mention Executive Function difficulties.  Google that to see what it means.  It is very typical of those on the spectrum to have some executive function problems that can have a huge impact on their ability to learn because they struggle to organise, plan, sequence instructions/work etc.  He may need certain supports to help him complete work.  He may not have a good understanding of time management etc.
It is good that he is asking to make friends.  My son also does this (he is 7).  But like your son he doesn't really know how to go about it yet.  My son goes to a mainstream school that also has an autism unit and which also has around 5 autistic/aspergers children per class.  At this school they have a social communication programme which my son will be joining.  The school also wants to start getting the parents in touch with eachother so that we can begin to plan playdates.  This may be with other autistic children or typical children from the same school.
You can also help to develop his interests.  But I would recommend a parent support group for contacts.  And you may find another school is more suitable.  Go and visit them all and ask them how they would support a student with Aspergers.  Ask them how many children they have in the school with the same diagnosis etc.
For clubs he might like to join you could consider swimming, trampolining, (if he is interested in astrology find out if there is a club), rock climbing, fishing, scouts etc.
Those on the spectrum also have difficulties with attention and focus.  They can pay attention for hours to things that interest them, but cannot make themselves pay attention to things they need to for example in class.  This is typical.  It may be part of ADD or it may just be Aspergers.  Anxiety is common.  They need structure and routine to help them feel safe in the knowledge that things are going to be predictable.  If the school/home life does not have enough structure for them they will be anxious and will throw tantrums and get very upset when unexpected change happens.
For those at the higher functioning end they are also very self aware and this can lead to low self esteem as they understand they are different.  They can also have depression etc.
But having autism or aspergers is not a totally negative experience.  He may well struggle to do some simple things and yet really excel at other things.  
I would start along the road of a diagnosis.
Get in touch with a parent support group.
Find out about different schools in your area that may be more suitable.
Start socialising with other families and get some help to begin finding groups and interests for your son to follow.
If he is diagnosed I would also recommend you start to explain to him what his strengths and weaknesses are.  He needs some positive role models and some postiive feedback about his abilities.  There are alot of characteristics to Aspergers that will make him a very valuable member of society.  He will be loyal and honest and truthful and will want justice.  He will follow his own beliefs and not be led by another.  
There are any people with Aspergers who hold high powered jobs or run their own business.  They get married and have children.  They are useful and significant members of society.  
I'm sorry i've rambled so much!  But I hope that helps.

[madmum841]

i also believe my son has aspergers .i have been tryin to get diagnosis for him since he was 3 he is now 9.he displays strange behaviour that makes him stand out ,with other children.hence he is picked on daily.he has never been able to forge friendships.he flits from 1 friend to another,and has never had a best friend.in his 9 years he has had 2 party invites.he said odd things and seems very adult like in the way he holds conversation and is very logical for a 9 year old.when he plays with toys he groups them together in lines.he talks about killing a lot.i have been goin to see clinical social workers for ages and they have practically blamed it all on me.they hve said it is a clash of personalities,it is the way our families function,they even said he behaves the way he does because i was adopted.they are always clutching at straws,and my child is suffering .he seems very lonely to me.he also displays physical symptoms he is very clumsy,he still dresses incorrectly ,jumpers back to front shoes always on the wrong feet.he has a dairy or milk protein allergy i think because he almost always has very loose stools.please someone give me advice as he is becoming more withdrawn and more aggressive as he gets older.

[Sally44]

Firstly if you google DSM IV for Aspergers it will give you the clinical criteria for a diagnosis of Aspergers.  
If you click on the Health Page on the top right hand corner of this page and go into The Behavioural Characteristics behind a Diagnosis of ASDs, you will see that I have posted the clinical criteria for autistic spectrum disorders (and also Aspergers at the end).  Parents have also posted examples of their child's behaviour that meets the criteria.  So that will give you a good idea of the kind of behaviours the professionals are looking for when they observe and assess someone.
So, having read that, you need to keep a record of all the things he says and does that you think are part of Aspergers.
You need to go to your GP and ask for your son to be assessed by a multi disciplinary team and you want to be referred to professionals who have experience of diagnosing autistic spectrum disorders including Aspergers.  You will take with you the evidence you have written down of how your son fits some of the criteria.
You can contact the Autistic Society of America and find out about a local chapter that could be able to give you help and advise.
If you can afford it, you can get a private assessment done.
Sometimes there are ways to get a private assessment by experienced professionals but at a cheaper rate.  SueNYC has posted about how to do that, but you could ask for her opinion on how to go about it.
How is your son coping at school?  
Does the school think there is something going on and do they have any experience of other students with Aspergers?
Through the ASA you should be able to find out about a parent support group in your area.  Joining them will help you get lots of information and advice.  You can also find out from the parents which schools they send their children to.  You tend to find there is one or two schools that have expertise in autism and everyone is sending their children to those schools.
At nine years old being clumsy, not being able to tie shoe laces or dress himself properly are all indications of something.  How is how balance and motor co-ordination?  This really needs to be assessed by an OT.  His self care difficulties could be down to a number of things, but again they need mentioning to the doctor.
Although he is verbal, if he has a strange voice tone, or accent, or talks and appears unaware of whether the other person is interested or even listening, or if he has pet subjects he likes to talk about etc, these should all be mentioned to the doctor and you should ask for a referal to a speech and language therapist for assesment of his speech and social communication skills.
The fact that he doesn't have any friends and although he appears to want to have friends seems unable to do so, also needs pointing out to your GP.
Tell your GP that you believe he is becoming withdrawn and depressed and that he is also getting more agressive.
All the above are relevant and your GP should refer you.
Make sure you keep the appointment no matter how far away it may be.

[SueNYC]

Use the health system - schools will make light of issues because they are so stretched for budgetary reasons.  This morning I was talking to my neighbor (we live in a giant complex and the line of little yellow school buses comes in the morning).  His son is a lot less functional than ours - and they have to fight each year so much harder than we do.   They are not funded to the same degree (we are at 98% and they are in the low 70's)  and they are almost going bankrupt  dealing with the district - why?  Because we had a better set of reports than they did. We also have a letter for private schools and they don't - they got their funding on a technicality.  Again, it was being prepared.  


Most people stay in public - but there are so many thing you can get for your child regardless of the situation.  Extra help in organizational issues (many OTs do this), writing issues - most of the children in my sons school are heavy on the facts in their essays but can't  write effectively, some help in social skills (though to be honest the clinicians at NYU are calling social groups a dead horse except some of the kids make friends at them).  Schools alone are not going to solve or cure your child - in fact - most parents can do a better job but maybe his day could be made more comfortable for him.

[samantham]

You just described my son to a T. My son, who is now 17 was diagnosed with Asperger's at age 12. Everything you described from his inability to make friends, getting picked on (I think that has always been our biggest issue), to the way he touches you in public is exactly what I've experienced.

We always had questions regarding Autism from the time he was three due to his physical tendancies ( flailing hands, pacing when excited, talking to himself, awkward motor skills, and rocking on his hand and knees while chanting). He would spend hours lining up crayons on the floor. At the age of three I had him evaluated at The Birth to Three Center in CT.  I was told he was normal because he would make eye contact and was verbal at an early age  but just needed some more social interaction with other children.

Throughout the years we had consulted numerous psychologists, psychiatrists and behavior specialists. He was prescribed many different medications over the years for depression, anxiety, bi-polar and then finally scizoaffective disorder. He was prescribed Lamictal, a drug used to treat Epilepsy seizures but also used for bi-polar mood swings. He was also prescribed Seroquel, a mood stabilizer. My husband and I were hesitant about putting our 11 year old on such powerful medications. However, our son got to a point where he was so anxious at nightime that he could not sleep. One night, at about 3:00 am I found my son curled up, sleeping in a built in bookshelf in his room with his light still on. He said it was the only comfortable place he could find. This is when we decided to try medication. Although the medications seemed to help him with anxiety and his fears, we were not convinced that he was actually schizoaffective. A year later, the same psychiatrist suggested that he could have Asperger's Syndrome. After some research on Asperger's we were convinced it was Asperger's. It was recommended by the psychiatrist to keep our son on the medications to help cope with anxiety. Although the long term effects concern us, we (including our son)feel he needs to continue on this medication.

One major thing I forgot to mention was the fact that my son has a partial hearing loss due to contracting Meningitis at the age of three. The only positive thing to come out of this was the fact that he was receiving special services through the Florida school system due to his hearing  disability and received an Individual Education Plan (IEP) allowing accommodations for his hearing impairment.  This made it easier to introduce accommodations when he received the Asperger's diagnosis.

My advise to you is keep searching for the right doctor to listen to you. If you have that diagnosis, the school system has to make accommodations. Middle school proved to be the most difficult for my son, especially with bullying. Having the schools support makes all the difference. They actually provided a counselor he could go to at any time for coping with bullying or other issues ( sometimes paranoia). This helped immensely.
Today, at age 17, my son is doing better than ever. He has a very small group of friends who struggle to understand his tendencies yet seem to accept him. His teachers adore him. He was even inducted into the National Honor Society. We still have our ups and downs, however, our son is growing into a fine young gentleman and is now planning ahead for college (at one point we didn't know if he would even be self sufficient). You have to be persistent, get that diagnosis. You might try CARD ( Center for Autistic Research Development) to get you the resources needed.

[tor61]

My son is autistic too but will not play rugby in spite of 3 brothers, 1 twin sister and father who all play.  Would make it very simple re recreating.  Often though we track through country looking for Thomas and friends events with vintage trains.  Very lucky though re school.  Check out Aspect which runs schools for autism in NSW Australia.  We have one in Albury and we are seeing the benefits.

[SueNYC]

In the U.S., the medical diagnosis holds a lot more weight.  You can ask for a neuropsych by a private doctor.  You do have to request it - and then your school district will hum and haw.  Then you right another letter requesting an IEP hearing to discuss the neuropsychologist - you don't have to use theirs.  Luckily after our psychiatrist signed off on one, pour insurance paid.  You can also get a discounted one at Child Study Centers if you let the post-grad do it.  They are supervised by the head honcho. The tests are pretty standard so letting the post-grad do it is no big deal.  They are expensive.  A real good school psychologist (and ours had a clinical Phd told us not to let the school test him because then they would have to fight us during an IEP).  

By the way, even though they say every year we are going to court they always settle at the last moment.  Don't be afraid to exercise your rights.  

[Leslie65]

I have had many years of experience with Aspergers children in my family.  I only learned of this Syndrome 8 years ago.  So none of my 3 children had support in public school and here in the US Aspergers has just recently been brought out in the schools.  I am very lucky in that my son, now 46, learned at 19 how to "put on" a business personality.  He would not talk on the telephone until he was 14 and mostly communicated with us via a typewriter I set up on the kitchen counter.  He is successful, in the Computer field of course, in Australia.  He is a college graduate with a BA in Computer and in Business.  My 1st daughter taught herself to be like other girls in her grade, her words to me as a grownup, so she would not be "different" like her brother was.  She also had a baby at 15.  She did not go beyond her 2 year degree in Computers but has had a series of businesses.  She is 45 and will soon be back to the US from Australia, leaving an 18 year old in college.  My next daughter was born to my sister and came to me with lots of emotional problems requiring eventual hospitalization.  At 42 she is not a relatively happy single mother of a 6 year old with easy to recognize Aspergers Syndrom (syndrome).  My  youngest daughter, at 41, was a successful business woman in Australia.  She has recently decided that I am the cause of all of her problems.  She has quite profound Aspergers, still not able to talk easily with adults, but she is working on it with the help of a counselor.  2 of her 3 children have profound Aspergers, with a bit of violence thrown in like my son.  They are all teenagers in Australia.  I can only hope that her counselor will help my daughter to understand that I am not the cause of her problems, even though I can track Aspergers down from my maternal Grandmother.  At some time she will contact me again.
I wish I were raising my children now.  In the 1960's every doctor I took  my children too here in California told me they were fine.  But I could see, by a lot of the behavior you mothers have told about, that my children were not fine.  We all lived through it, quite often by taking the child out of school for a day or so.  Home schooling was not available then.  I will be homeschooling my 6 year old grandson and probably working with my 2 1/2 year old great granddaughter, who is exhibiting a lot of the classic symptoms of Aspergers Syndrome.  I emphathise with all of you going through this type of childhood with your children.  But I can say that you will live through it, I did.  Causes grey hair!