Fear of and Necessity for Labels

I have no friends apart from one girl who I see once a year. She befriended me in the 6th form when I had no-one else to talk to.

I would like to have a friend who I can see regularly, but I am very inflexible and so I cannot just meet them at any old place. My need for control means that most things have to be done my way, which makes keeping friends very difficult. I prefer being with people who are older than me and I can relate to people better in formal situations.

I can identify with longman. I often question my diagnosis, although I do this a lot less now. I obviously have AS and  officially diagnosed two years ago, but  I am certainly at the higher-functioning end.

Here are some of my more obviously AS features when was a child:

Walking on tiptoes, although only with no shoes on

Literal thinking: thought that the school was going to burn down when heard fire-alarm, had to be dragged into school; boy told me he was going 'to kill' me after I had really annoyed him, and I literally believed him; taking safety instructions too far resulting in OCD and obsessive hand washing etc etc

Extreme disorganization, putting everything in one place at school

Hopeless at team sports

Poor understanding of fiction but a mechanical reading age of 15 when I was 10

Could not make friends with more than one person at any one time and became possessive, resulting in frequently having no-one to play with. In these situations I would annoy people or play with children who were a lot younger than me

I had severe perceptual and spatial awareness difficulties (as identified in my Statement), and I could not do the most basic of jig-saws. Maths difficulties and problems with following instructions

Extreme interests and tantrums when could not get my way. Age three I once screamed for two hours straight because I had to stay in my pushchair near a busy road

However, I could lie, although in a basic way. For example, I once threwa magnifying glass into the toilet in year 3 and when the teacher asked who had gone into middle toilet-the toilet where I had put the magnifying glass-I did not answer.  And I can be creative with my language nowadays, although this has been learned-my Dad was an English teacher. However, I am very bad at detecting irony and sarcasm in fiction, particularly drama on TV.

I can make eye-contact, but I cannot read people's eyes at all and I find that looking into people's eyes at close-range is very distracting.

I am interested in people in a formal way. I ask them question as a means of collecting facts about their lives that I then write down in my extensive note-book. I like to learn about people, but I am very easily distracted in social situations and I often end up thinking about myself. I do try not to do this, but it is difficult. I love talking and I sometimes have the strong urge to talk at length, but I do try and moderate myself. Nowadays, I have a lot of insight into my condition that I lacked as a child. My main difficulties are the extreme anxiety, need dor control and obsessional thinking

my son is considered to be in the mild end some characteristics being very suttle and others more severe, been advised that i shouldn't have any major problems until he enters full time education. looking to his future its hard not to be a bit negative. but im sure that there must be other parents that feel as i do as there must be other people with mild symptoms that question it as much as you. 

Although knowing helped me sort my life out dramatically, one of the things that just never stops is do I really have aspergers? No I cannot possibly. But then again I just do something patently aspergers.

I don't know if this constant questioning is a good or bad thing.  It probably helps me to resolve issues and refine strategies and is just another variant of negative reinforcement versus thinking positively.

Because I'm in the 'mild' category (just there are some obviously not so mild bits) it probably is a good idea to review the diagnosis, even though its a reality. As I've done some professional work with people on the spectrum I'm regularly reminded there are people a lot worse off than myself; likewise reading up on aspergers regularly, I'm often saying surely that's not me or that's much worse than anything I have to deal with.

So I end up feeling a bit guilty. Then I go and do something obviously, patently aspergers, and have to concede, it is me after all.

Anyone else with the diagnosis who experiences this is it? isnt it? uncertainty?

thanks, i actually feel myself, looking forward to a diagnosis, whatever the outcome, i can see that its better for both of us to do it. every day i think of a reason he can't have aspergers and every day he shows me a reason that he may have aspergers. i'm not sure if i'm really intune with my son or completely neurotic, but at least now i want to know :D

Having been on both sides of the "diagnosis" fence I hope my experience may help someone decide...

When the first concerns about my DS were raised by the HV at 2 I was totally devastated and I went through every other possible specialist to find some other explanation of my sons behaviour before I had the final diagnosis of ASD at 4 1/2. I know I can say here that I felt I had done something wrong for my son to be the way he is.  I can say now with pride that he is not at all as I was warned and he delights and surprises me every day (especially with his energy).

Around the same time I has suspicions about my DD (Now aged 9) who was aged 5.  She was seen by the paediatriction at the time and I was dismissed as a "neurotic mother" whose daughter was copying behaviour.

16 months ago my DD's school expressed severe concerns about her behaviour and progress and we got an "urgent" referral to the local CAMHS.  This week after 3 cancellations she was finally seen and although diagnosis is not yet final we are fighting hard for an aspergers (ASD) diagnosis which her school wholeheartly supports.

I am glad my DS was diagnosed so early as his needs were very severe and I was in total denial of his problems.  I am still fighting for a diagnosis for my DD so she can get the support she needs and can start to excel the way my DS has.

I think its totally the parents choice in persuing a diagnosis but after my sons needs were sorted I want my daughters more subtle but no less important needs to be recognised so she can achieve her full potential.

At the end of the day they are still my children no matter what labels are put on them and I will still fight tooth and nail to get them the support they deserve to fufill their potential.

Good luck and remember no decision is the wrong decision if its right for your child

Franks Mum

Knowing is so important. Not understanding why bad things happen or feeling bad when bad things happen is not a great world to be in. So the great thing about diagnosis is knowing what has been happening, what is happening and how to manage what happens in the future. Can't be a bad outcome. And knowing vastly outweighs the labels issue

reading all the comments here has helped me make a clear decision. my son was referred for assessment last year and is believed to have aspergers, i asked to post pone diagnosis, as i was worried what the label would mean. i am to return this year and have been, until now, undecided what way to go. i can now see that it doesn't have to be a negative thing and that it will help my son in the long run 

reading all the comments here has helped me make a clear decision. my son was referred for assessment last year and is believed to have aspergers, i asked to post pone diagnosis, as i was worried what the label would mean. i am to return this year and have been, until now, undecided what way to go. i can now see that it doesn't have to be a negative thing and that it will help my son in the long run 

perhaps lack of understanding in the larger world would be easier to bear if there was a stronger support base for adults in the world of support for autism...one only has to look through any asd related journal including "communication" to see that almost all support advertising is directed at young people...schools,respite,colleges ,residential etc..its really like you fall off the radar at 25..

imagine looking in these same mags and seeing regional resourse centres,social centres,dropin centres,supported work environments,respite care centres for people with HFA\aspergers...for those of us who cannot function independantly but are not deemed to be learning disabled..or dont have severely challenging behaviour.in my area there is no where to go at all after you are 25...

i would certainly have more courage to be open about myself with the outside community if the asd world didnt reflect so much that we are in some way past it.

I have really found it interesting reading these comments. Certainly lack of public and social services/health services understanding of adults makes me wonder if we are any further forward.

And parents groups - I belong to one from a professional interest but it is useless for me as an aspie - I cannot fathom the notion they have that they are only about carer's issues. The only over 20s on the spectrum that attend are the ones that came there with their parents for a decade or more, and still come with their parents - like they are on show.  And I agree, NAS should address adults more.

I'm glad to have the diagnosis to better understand myself. I couldn't have had it when youger as I only survived interventions because my parents, with a medical background, wouldn't allow any intervention. Though they didn't have answers, they clearly saved me from some pretty horrible issues of misdiagnosis and medication - so I guess I have to be grateful - just it didn't feel that way growing up.

But I find it difficult to be open about it. Shortly after diagnosis I was at a professional conference, and in a workshop on "correcting" young people with autism, which I found horrible, I owned up to being on the spectrum. I was horrified to spend the rest of the conference in "does he take sugar?" mode, getting unwanted sympathy and attention from professionals I'd hate to see going near anyone on the spectrum.

Although an extreme case, that has guided my thoughts on this. I'm discrete who I tell about it but eternally grateful for the knowledge. Working in education and giving educational support to young people on the spectrum I've been very aware of the two lifestyles and the reasons for their choices. For some people it is important to appear normal even where fitting in is hard, so making it known may well be unwise. I've seen others who tell everyone in every situation, even in the face of adverse reactions.

I don't tell young people I'm helping that I have Aspergers. It is really difficult to work out whether that strategy would be good or bad.

So can I echo previous commentators here and ask NAS to give some thought to this dilemma. It is important that there is sound advice backed by good practice and voices of experience, the pros and cons of "wearing" the label.

I have only just received a diagnosis at the age of 30, and I believe it was the stigma of 'labelling' that prevented my parents from seeking help for either myself or my brother.

My brother saw an Ed Psych at arounf the age of 8 who wanted to diagnose ADHD and my parents refused. I spoke to my father recently when I was seeking a diagnosis for my AS and he said he knew I was different but that diagnoses are 'self-fulfilling prophecies', and that I needed to have a clearer plan for my life *rolls eyes*

In my opinion, labels can me a good thing or a bad thing. If you use them as an excuse then they aren't helpful. But if you use them as an explanation and a signpost for support and growth then they are very useful indeed.

hi....i too think its great that mental health/support needs of children are high on the agenda.ofcourse this is right and essential.however im also sad that the mental health needs of adults on the spectrum and support for those adults who do not have"carers and families"around them is almost not seen as a reality.

i have spent a long time in the mh system and have seen many high functionning adults unfortunate enough to have been stuck for years on psyche drugs often misdiagnosed and unable to live without support, often from untrained workers in asd.

over time people gradually burnout and give up.i have seen this so many times.many cannot turn to family and any carers know more about schizophrenia and recovery plans than they do about asd.often mental health issues are expressed differently in an adult with asd and this again is not picked by mhealth workers...

in my area i asked the NAS for any help i could access as an adult with asd including housing.i was told there was no housing at all unless i had a learning disability or was under 25.i was directed to rethink!...rethink is an organization that works with severe mental illness.i was actually being moved on from their care as i was deemed as no longer fitting their criteria.

and this is the problem.if you are an adult over 25 ,in parts of the country, with mental health issues...there is literally no where to go...even the NAS is not sure where to direct you.this can only add to the terrible sense of isolation and not fitting in.

mental health issues in adults is a major problem as many sit undiagnosed in longterm psychiatric care being given inappropriate drugs and in stressful inappropriate psychosis orientated supported housing...

Having a diagnosis made a huge difference to my ability to cope with other people's reactions to my son, and to my confidence when taking him out. Instead of trying to give some long garbled explanation as to the nature of his difficulties I could now just say he has autism. For many people, that information was enough and they gave both him and me the leeway we needed to function in mainstream situations (such as groups at the children's centre). Where people wanted more info the knowledge I had gained as a result of my son's diagnosis meant I was able to provide it.

I then made a point of talking to some local groups I was involved in explaining what autism was, debunking some myths, explaining that when they see a school age child having a tantrum that child may have autism or another SEN and it's wrong to assume they are spoilt and blame the parents. And I would say to them that you don't expect a person in a wheelchair to just get up and walk - you make allowances for them. Similarly you can't just expect someone with ASD to "fit in" you need to make allowances for them in the same way as you do for a visible disability.

A diagnosis has also meant my family have adapted to his needs much more, more support and training has been available to me as a parent - the NAS workshop on sensory issues has been hugely beneficial, for example - and my son is now in a special achool where his needs are met, he is happy and at the same time he is challeneged academically where he is able.

I was very concerned about labelling when I was in the process of getting a diagnosis for my son, but three years later, I have found it to be a huge advantage. 

Not only has it helped my child gain a place at a school equipped to cater for his needs  and access to specialist autism services, it has given me an understanding of his difficulties, and the knowledge I am not to blame.

People do learn to cope over time and a lot of that can be helped with support and understanding of family, friends and professionals (whose services often only become available after diagnosis) 

As Pavlova points out anyone who is different is labelled anyway. Surely it is better to be given a label that has the potential to provide help and understanding.

In our case, a diagnosis came late (at the age of 20) and has definitely been beneficial. It provides an explanation for unusual behaviour and gives the reason why B always felt different - unable to match the peer group, complete school or hold down a job.

Not having a diagnosis did not mean that there was no stigma! There was the stigma of being 'not right in the head', which was often said by people who couldn't understand what seemed to be contradictions (without the explanation of ASD). There was also the stigma of being lazy, stupid, hysterical or attention-seeking - again, accounted for by a diagnosis of ASD.

So, although I do have sympathy for a parent who is hesitant, my own opinion is that a diagnosis is essential to save a young person's education chances. And of course, it is then important to put in place measures to protect children from the harsh battering life can dish out at an age when they should really be protected and nurtured.

Having said all that, I also agree with Shek that people learn to cope over time. I have been amazed at the changes I have seen in individuals on the spectrum.

Hi Jim,

Email sent.

Hi Shek,

Thanks a lot for the comments. I hope you don't mind but during the testing I just want to keep an eye on any problem.

Any chance you could drop me an email to communitymanager@nas.org.uk about your avatar, just to say which you selected. For me it seems to be coming up with a broken image.

Thanks, if you can email that's great but only if you have the time spare.

There are both pros and cons to having a diagnosis.

I agree that having a diagnosis can give better understanding regarding behaviour and needs, and appropriate support. 

However, because the general understanding of autism is still in its infancy, it can also lead to stigma and stereotyping.  So I can see why a parent might be hesitant.

The mantra 'Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them...' hides the vast differences amongst individuals on the spectrum.  And the disability is not static, particularly for those on the higher end of the spectrum.  We learn how to operate in society over time.  There are even qualified social workers who have a diagnosis (however, in the cases I know of, the diagnosis was made in adulthood - would they have been employed in such a job if the potential employers had known of an autism diagnosis?).

Even the NAS seems more geared to the carers of children with autism, rather than those with autism themselves.  This is despite their laudable campaign for the rights of adults with autism (the 'I exist' campaign), and their work leading to the Autism Act.  The involvement of those on the spectrum is still marginal.  NAS local groups are primarily support groups for carers.  And it is disapointing that their current campaign on the mental health of children on the spectrum does not also include adults, despite the NAS 'I exist' campaign.