Do we need a diagnosis

My 11 year old daughter, I believe has aspergers syndrome.   I have stuggled for years with different issues.  She is not disruptive within school however she has severe melt downs at home.  School does not accept there is an issue.  As she is fairly intelegent is in the top sets for most of her lessons.  She does not talk to peers and just completes all task given to her.  She chooses not to talk to adults, does not go out on her own and has many other issues.  I have been pushing for a diagnosis for her mainly to get school to let me know if any think different is happening with in school so I can prepare her.  She does get very frustrated and depresses.  Half the time she is unaware of issues in school and if they  are given a verbal instruction of something she is unable to come home and repeat what she is supposed to do.  All I want school to do is eithere telephone me or drop me a letter.  This would  help me prepare her for the change and have less disruption at home.

I have been looking at some of the postings on the site regarding diagnosis and woder what are the benefits to my daughter.  I know and to a point she knows and accepts that she has aspergers.  Why do I want to fight to try and get a diagnosis for her.  It is a battle each and every time we have to visit the specialists.  She will not attend doctors, dentis etc.  I hate putting her under this stress and do we just accept that we know what it is and help build stratergies

[SueNYC]

Send a letter asking for an evaluation - but be warned - most diagnosis criteria demand that these issues happen in more than one setting.  Most of the children that are discussed on this board have difficulties in the social areas all areas of their lives.  Most children with Aspergers prefer to speak with adults or children that are younger, peers are perhaps the most difficult group for the to communicate with.  You have failed to mention things like obsessions, etc., strange speech patterns, a very literal state of mind.    Other disabilities account for not being able to rely instructions properly and do not point to Asperger's.  Also meltdowns can be due to other reasons.  one of my kids has meltdowns wen she feels pressured and she does not have Asperger's.  She just doesn't handle pressure well.  

[mother200]

Hi sue thanks for your reply

She has lots of obsessions from collecting pebbles, and feathers and also hair!.  She does not recognise prople out of their normal envoroment.  She thinks very latteral.  We have stratergies to deal with most of these things.  She has a note book and writes down things that she has not understood and we go over them when she is at home,  She has a very high pain tollerence but hates having her hair combed asa she say it hurts too much and because she will not visit the hairdressers her hair is extremely long.  She is oversensitive to smells and the feeling of fabrics on her skin.  She does not communicate at all in school.  Some times at home and especially with unfamiliar adults she chooses not to talk.  I could go on an on.  When I say she copes in school I mean she is not disruptive!

[SueNYC]

You have the right to have a private evaluation.  School's psycho-ed's are woefully short and you will probably need sub-tests to figure out what is wrong.  Sam scored 99% on all the school's tests - even as his butt was being kicked out.  Even the school was shocked when the NESPY came back and showed that his executive functioning skills were in the single digits.  We were very scary parents so we got what we asked for - don't hesitate to ask - the school social worker will not tell you about these things (as it costs the district money) - they just hand you a booklet - it is your job to figure out what she is entitled to.  Don't be shy to ask - corporate America wasn't.

[Sally44]

It is very typical for children to behave differently at school and home.  A child with Aspergers may be just keeping everything under control at school, but all the emotions and frustrations of the day come out as soon as they walk through the door.  That is probably because they feel safer at home and any outbursts in school can lead to other changes such as being sent out of the class or to the headmistress etc.
Not recognising people out of their normal environment is called prosopoagnosia (not sure if i've spelt it correctly).  This is called face blindness.  It means that your daughter is processing information differently.  Ie. she recognises someone in one environment but not in another.  She may not recognise someone if they change their appearance.  Donna Williams (a famous adult autistic on www. donnawilliams. net) had the same thing.  She said she recognised her mother by how she smelt, and her siblings by how they moved and her father by how he walked (or something similar to that).  I would suggest you have your daughter screened for Irlen Syndrome - google that to see what it is.  It is a visual perception difficulty that can be rectified by wearing Irlen tinted lenses.
You can also google DSM IV Aspergers for the diagnostic criteria for Aspergers and see if that sounds like your daughter.  You can go to your GP and ask for a referal or you can get a private report done.  I would also suggest googling Semantic Pragmatic Speech Disorder to see if that sounds relevant.
The benefit of a diagnosis should be that school support her needs (which they should do by law).  She should have a Speech and Language Therapist to assess her speech and communication as well as her social interaction skills.  She should have visual timetables and visual symbols and supports to reinforce things and help her navigate her way through the school day.  If she can read she should have all lessons printed out for her instead of having to try to remember them.  She may have Executive Function Disorder - google that to see if it is relevant.  The SALT should also set up a Social Skills Group and your daughter should also have access to structured activities during playtime and dinertime such as dinnertime clubs.  She should have a learning mentor to help her in classes.
As an adult a diagnosis should help all professionals who come into contact with her to understand what her difficulties might be.  Her avoidance of any kind of change etc is symptomatic of Aspergers and should be something the school should be helping her with.  Typically they would learn that change is not always bad, and their timetable would show a 'change' symbol if something different was going to happen.  If she just cannot cope with that, then she should be taken to do something else instead of the 'changed' activity eg. taken to the computer suite rather than sit through a class that is being taken by a cover teacher. etc etc.  She needs these supports now and needs to learn how to use them and become more tolerant of them because she will need to be able to do these things to a greater degree if she goes to college or gets a job.  But by learning what she can/cannot do now it helps everyone start to build a framework to support her.  BUT WILL THAT HAPPEN???  Probably not, unless you take the bull by the horns, which may involve getting private reports and also getting a legal advocate who specialises in Educational Law.  It may involve moving your daughter to a school that has experience and expertise in autism.  These choices are not easy.  But are things okay as they stand now.  Can your daughter continue through her life in the same way as she is doing now?  Is it affecting her self esteem or mental health?  Can you see her coping when you have gone?  These are all things to consider.  
I think you would benefit from getting in contact with a local parent support group and meet other families in the same situation.  It would also help your daughter to meet other children on the spectrum.
From your post I do suspect she has sensory integration issues.  Google Sensory Integration Dysfunction/Prosopoagnois and see if that is relevant.  If it is then she needs to be assessed by an Occupational Therapist.  On top of OT/SALT she should also be assessed by a clinical or educational psychologist.

[Sally44]

Prior to my son getting a diagnosis all professionals (SALT, OT, Ed Psych) all observed and assessed him at school and at home.  I also made videos of how he behaved at home.  That is always an option for you.  Don't let your daughter know you are recording, but set it to record.  This isn't a betrayal of your daughter, it is you showing her behaviours at home.  That is always an option.

[mtgoat911]

hey mother200 welcome to the forum
i have a different perspective on all this, i spent years being evaluated by professionals, went through several diagnoses, and finally learned how to deal with the symtoms (symptoms) and focused more on treating the symptoms than worring about diagnosing my defects, my son also has been through this, he was diagnosed with adhd by one doc and aspergers by another doctor, i decided to work on helping him, i spend more time adjusting to his needs than i do chasing a label........to me its not that important!!!!

[Sally44]

To a certain point I do agree with you.  But there are times, even as an adult, when someone with Aspergers will not be able to cope eg. I think you posted about an incident you had at the dentist?  If the dentist was aware of your diagnosis he should be thinking about how his treatment is going to affect someone with Aspergers and he should talk it through with you so that you know exactly what is going to happen etc.  I know that is in an ideal world, and would your dentist have any understanding of Aspergers etc.  But the more the information is put out there the more people become informed which can only be helpful.
I have a family member who recently suffered a period of mental illness.  I told those involved that he had traits of Aspergers although he had never been formally assessed or diagnosed.  Once I told them that their whole approach to him changed and they began to understand his rigid behaviours and they approached his treatment in a more 'autism friendly' way.  
Labels should be something useful.  Labels on tins tell us what is inside them.  But I know it isn't as easy as that and people make choices as to whether or not to diagnose.

[SueNYC]

A NESPY doesn't diagnose - but it tells a neuropsych how you think.  For instance, using the standard school psycho-ed that they do during an evaluation was useless - all it cared about was he able to answer the questions correctly.  It never asks what thoght process he used to get his answers.  Only when the tests get into deeper more abstract concepts do these things emerge.  Schools tend to get diagnosis wrong because they are forced to give one that they have the resources to deal with.  And though Sam probably does not have the full criteria for autism/asperger's his deficits mirror some of the disorders problems, and therefore he is best treated with therapies that were designed to address those deficits - i.e. he goes to a school designed for children with Asperger's and his psychiatrist runs NYU's Asperger Institute.  We treat the symptoms, not the label.  

[mtgoat911]

well, for it its been frustrating because i have been seeing "professionals" for 25 yrs.
i have been through so many different test
each doctor had a new opinion
and every few years there is a trend!!! right now it is aspergers
i bet in 10 years half your children will be diagnosed with something other than what they are diagnosed with now
i work for the mental health system, and let me tell you, its not very accurate
heavily opinionated, and inconclusive
i have more thoughts on this subject but my family has got me surrounded!!
and sally, what happened in the dentist office, to me, seemed like an aspergers meltdown, maybe it was a panic attack
and you are right, it causes problems, i have not been back to the dentist and i need some work, i also have not been to the obgyn in 3 yrs, for the same reason
i guess all we can do is work on our defects one by one and help our struggling children cope the best way they can,

[Sally44]

The thing with 'autistic spectrum disorders' is that it is invisible.  Everyone understands immediately they see a blind person that they have difficulties and will immediately have some kind of understanding as to what those difficulties might be.  With autism too often the child is seen as naughty/spoilt/rude/agressive/retarded/weird etc etc.  I am fortunate that my son does cope relatively well and rarely has meltdowns in public.  But when it does happen, and everyone is looking at you and your child, you do wish you had a huge banner that read something like "my child isn't being naughty he is being autistic".  And I thoroughly agree with you that the medical approaches to the diagnosis and treatment of it varies greately from professional to professional.  And unfortunately many parents find that they have to actually study about all the different disorders themselves to inform the professionals!  But people give labels anyway.  And I would prefer my son to have the correct label of autistic spectrum disorder than a much more negative one such as naughty/bad/spoilt/weird etc.
I do know what it is like to go through the medical system for years as I have only recently been diagnosied with Fibromyalgia although I have been going to the doctors with the symptoms of it for 25 years.  And for most of that time I dealt with it on my own because doctors behaved like I was making it all up.  But the condition had a big impact on my life.  I have lost jobs over it.  For about 5 years I was convinced I had cancer because I was in so much pain.  But when I didn't die (and prove the doctors had all been wrong and had missed some serious disease), I realised I just had to get on with what I knew to be my own situation.  I didn't need anyone to put a label on it because I knew it was real.  However, now I have a diagnosis, it has helped me to be understood by other professionals.  Yet there are still some who think the condition doesn't exist - as some professionals think that disorders such as ADHD exist.  But if enough children are diagnosed and grow up into adults, there is then proof that these adults need support.  If everyone with a diagnosis remains invisible nothing will ever be made available for our children.