Is just 'coping well' good enough?

Thats great, I hope she can help keep us posted!

tbag you have just given me an idea for my daughter.  I have emailed our respite worker to let me know if she is able to record any notes on my daughter's behaviour that I could use to state our case.

Thank you both for your responses.I don't think she will ever feel OK in crowds or large groups, she described everyone coming out of school as 'like the sea, coming to drown me'.But unfortunatly I think my daughter would like a friend, she just can't make any, she won't speak in front of others. She is very isolated and the other children think she is odd. My mum supports me with my son so that I can take her to the cinema and swimming etc.

I too found it very difficult to get a diagnosis for my daughter, she is a mixture of 'passive' and 'active but odd'. Her primary school refused to support a referral for assesment, my G.P only reffered her when I took her there and begged because she was self harming due to anxiety. To help get a diagnosis I sent her to a registerd childminder once a week for 6 months and asked her to make observations etc, so that I had evidence in a second setting!

I absolutely understand, having both two daughters on the spectrum and being on it myself.  A very big issue is, that females are far more often passive autistics and therefore the schools either just don't get it or don't give a damn.  As boys on the spectrum are more likely to get aggressive, they get noticed more and get more support from the schools for assessment/diagnosis and with statementing etc.  The school just cares about meeting their requirements academically, so if your child is high-functioning, intelligent and passive, they are causing the school no bother.

I wish I knew what to suggest as this is a UK-wide problem.  My youngest (HFA) has a slightly more male presentation in some ways and she got her diagnosis easily and also her statement.  My eldest, I am still fighting for her diagnosis and CAMHS basically failed to diagnose her because she has been home-educated for the last 3 years and they didn't have recent school input!  I pointed out on many occasions that school input is not always useful (which even the paediatrician that diagnosed my youngest admitted) and they wouldn't budge.  You might find these Lorna Wing descriptions of the Asperger's sub-types interesting/useful:

Aloof
Most frequent subtype among the lower functioning. Most high-functioning in this group are a mixture of aloof and passive. Limited language use. Copes with life using autistic routines. Most are recognised in childhood. Independence is difficult to achieve. There may be loneliness and sadness beneath the aloofness. Rain Man is an excellent example of this subgroup.

Passive
Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Active-but-odd
Can fall in any of the other groups in early childhood. Some show early developmental course of Kanner's, some show AS. Some have the characteristic picture of higher visuospatial abilities, others have better verbal scores (mainly due to wide vocabulary and memory for facts). May be specific learning disorders (e.g., numerical). School placement often difficult. They show social naivete, odd, persistent approaches to others, and are uncooperative in uninteresting tasks. Diagnosis often missed. Tend to look at people too long and hard. Circumscribed interests in subjects are common.

Stilted
Few, if any clues to the underlying subtle handicap upon first meeting. The features of AS are particularly frequent. Early histories vary. Normal range of ability with some peaks of performance. Polite and conventional. Manage well at work. Sometimes pompous and long-winded style of speech. Problems arise in family relationships, where spontaneity and empathy are required. Poor judgement as to the relative importance of different demands on their time. Characteristically pursue interests to the exclusion of everything and everyone else. May have temper tantrums or aggression if routine broken at home, but are polite at work. Diagnosis very often missed. Most attend mainstream schools. Independence achieved in most cases. This group shades into the eccentric end of normality.

This is a big issue that the NAS needs to get involved in campaigning about...how about pointing this out to relevant NAS bods, Mods?

Hi There!

I have high functioning autism.

When I left school at 10 (I was advanced because I was so brainy) to go to High School I had the same experience because I hadn't made any friends. At that point I wasn't diagnosed, just perceived to be a bit geeky and weird.

Same happened at 17 when I left school and at Uni too - I didn't attend my graduation because there was no point and I wouldn't have coped with all those people.

Now I wasn't bothered by any of this  -I have never felt the need to have people around me except my Mum. My Mum though was very upset by seeing me so isolated knowing I was a quiet, inoffensive child. She found it hard that I had no friends even though I told her I wasn't bothered and didn't like or do what others did any way.

So I wonder how your daughter feels - does she feel lonely or does it not really bother her, because I find as an autistic person I can't really be bothered with people and as I get older, much less so.

If she is bothered then YES the school should be doing something to help her and be collaberative in their approach. It's no good telling autistic's what to do, I don't like that because it assumes I am stupid. But sadly, it may be, she is destined to a lonely life as many of us are. I guess some cope better with that than others and school is a tough place to be.

At high school I just worked really hard and found I got on with the teachers well and that got me through. If they know she is autistic hopefully they will be nice to her and it will help.

Also I would make sure she is not being bullied because of her condition. School wasn't too bad for me, most people ignored me. I found that now I work, bullying has become a bigger issue but that is a different story...

I hope this helps and yoour daughter does really well at her new school.