How important is a diagnostic label for children?

The diagnosis was important to me as it meant for me personally that i wasnt completely useless as a parent and there was a reason for the way my son behaved and there wasnt anything without help and statagies that i could have done to prevent it.

My son is now 13 and it has been a long complex battle of meetings and tantrums (not just from him lol) to have gotten his diagnosis and the help he needed especially in school.

My daughter is almost 9 and we just got her aspergers diagnosis on monday, and now im all geared up for round 2 of battles to make sure she gets the help and support she needs, i made my mistakes the first time around now i know what her rights are i wont make the same mistakes again,

The diagnosis may be a "label" but that label opens alot more doors than no diagnosis so its got to be a benefit to the child in the long run,

I felt a diagnosis was important, my son who is 5 was diagnosed in march this year and has already started to notice differences in himself. I found it a lot easier to explain to him why after he was diagnosed and also to point out all the positive qualities of having aspergers to him...such as knowing more about disney pixar cars than anyone I have ever met ;)

I also have to admit that it has made life easier for me, we had experienced a lot of hostility from parents at Alexs school as his meltdowns are often aggressive. Because I am now able to say, look this is what it is I have found people to be a lot more accepting. The school have also helped with this by doing circle times focusing on autism and how lucky they are to have Alex in their class. (Incidentally the children have never been anything other than amazing despite Alex not being the easiest of people to get on with at times!)

I think getting a diagnosis for our family has been very positive but that it is definitely based on person to person.

Hi all

I am really interested in this topic of "labelling" as we toiled over whether to get diagnosis for years.  We feared the "label", the impact on our sons future, would he miss out on opportunities he may otherwise have had in many ways including employment, would he be teased, would he be discriminated against and isolated an outcast.

We eventually got the diagnosis for support reasons and over a year later, "came out".  Now, I do not know why we did not before. 

We have nothing more to fear than other folk that are different, i.e. Asthma, epilepsy, diabeties, short sighted, deaf and so on.  If you think back 30 years epilepsy and asthma were not well understood due to a lack of awareness amongst the general public and there was a bit of a stigma around epilepsy.  Thank heavens we moved on and we accept and understand these differences nowadays.  This is where we need to take Autism to - acceptance by raising awareness and helping those that have not yet had autism touch their lives to not fear it, but understand more about it.  We fear what we do not understand.

My 9 yr old son is proud of his autism and knows he is different, but also knows everyone in the world is different in some way.  He was only told 6 months ago. He like me, now takes the approach of, we want to help the other families that do not find it so easy as us.  I hope that we can together help raise the profile of autism and show people that it is not the whole person in the same way, as my poor eyesight is not all there is to know about me.  Just a difference we live with and with a little understanding and acceptance a lot of the anxiety could be reduced.

There is an Autism Alert card available in Scotland now which you can show to people if you are in a difficult situation i.e. melt down at checkout or to service providers i.e. a leisure centre.  I am sure there must be an equivalent available in England.  NAS will have details.  There is also a great little poster "How to Support someone with Autism" created by the department of health but the NAS will be able to tell you where you can get it from them I am sure.  Great for your local service providers and it makes them feel more comfortable about what they need to do and what they can expect.

So, I understand in situations where someone needs no support there may be no need to "label".  For us, we were putting everyone under more stress trying to keep it under wraps and avoid being labelled "the bad boy" and being laughed at because of frustration/unusual behaviour.  It takes careful explanation and the less dramatic the better but we are all different was the key message for us. Timing is important too, when they are ready and if possible in advance of High School and teenage hormones.  There are lots of books to support such as "The Big "A"" Me, myself and autism.

Ok, that's me got off the soap box at last - hope something in there helps.

Hi Dadof4 , 

I think that we all have asd traits in us lol ..but I definately feel that some can cope easier with life than others ..my asd son is a twin and although his twin does show traits his behaviour is a lot more managable and i have not even considered a diagnosis for him ..but it has been a godsend for the twin who has as it has opened up some doors for him although very frustrating at times ...I think it has definately helped all of us as a family group to help understand him and each other more easliy ..I am dreading next week as the twins are starting school and i am not really confident that my sons safety has been addressed properly ..but i guess we just have to wait and see .

It is sometimes difficult to not look at family history and think about many other family members who may also have an ASD.  We really believe my wife has Asperger's but she gets on quite well without a diagnosis.  Her brother and my son's cousin also have a number of traits which could put him on the spectrum.

Funnily enough my son who has the condition is actually my step-son but there seems to be a history within my own family.  My brother possibly had ADHD and/or an ASD, my sister shows a number of traits, my nephew is believed to have the condition also.  I, personally have a huge number of traits and it is only the fact that I have learnt to be social and that I have a really good imagination that seems to stop me from looking at a diagnosis for myself. 

It really does make you wonder about whether the 1 in 100 ratio is correct.  Looking at family history plus the number of adults I hear about getting diagnosed when they are much older it makes you wonder whether the actual figure could be more like 1 in 10???

Hi Hong Kong Phooey

I think the best thing when talking to your son about his condition is explainging the difficulties he could have but making sure he is aware of all the positives.  We recently had a discussion with my son about his condition as he was feeling a bit low about it.  We were lucky that he is such a huge pokemon fan.  We looked up famous people with a diagnosis and found that the maker of Pokemon has a diagnosis of Asperger's Syndrome.  There was a huge list of composers, actors, authors etc.

There is a feeling that lots of famous scientists probably were on the spectrum as well such as Einstein.  There is a general agreement that BIll Gates has autism although he has never been diagnosed.  I know of a number of adults with autism spectrum conditions who have led fairly fulfilling lives some with a diagnosis and some without. 

There are lots of young adults out there who act as mentors to young people.  A really good person to look at is a young man called Dean Beadle.  he has spoken at a number of conferences and does talks around the country.  There are many more such as him but he is one I would highly recommend. 

There are lots of resources out there for talking to young people about their condition.  The most important thing is over-egging the positives so that they far outweigh the negatives.

Hi Hong Kong Phooey,

Thank you for your comments.

I'm really pleased for you that you feel a diagnosis is helpful to you and your son especially when you can see it is making a difference as in going to the dentist.

My son has only had a vague diagnosis which really concerns me especially when I hear stories like your brothers and why I joined this forum so that I can take steps now while he's still a child to do things to help him - life in general is a huge trial to him!

I was also very interested in what you say about your Dad because (although I have never said so) I wonder sometimes about my father in law as I see so many similarities in behaviour that my son portrays.

Thank you and good luck with your son.

Our 12 year old son was diagnosed with Asperger's a week ago. I feel a profound sense of relief. My son is a bit more ambivalent but I think with time it will be a comfort to him. I hope so anyway. A diagnosis has already been helpful to us. Our dental practice has recently changed hands and my son, who is unbelievably nervous of going ,has seen three different dentists in as many months. This week, he was given an appointment to see yet another dentist and I was able to explain that he has Aspberger's and simply can't cope with all these changes. I was asked which dentist my son felt most comfortable with and have been promised that he will only see that particular person.

My brother was diagnosed with Aspergers at the age of 21. He's now 38. He initially refused to accept the diagnosis because it intensified his feelings of 'being weird' (his words) Over time, he came to be glad of the diagnosis. He has had a lot of mental health issues that he feels he wouldn't have had if he had been correctly supported earlier.School in particular was a huge trial to him.

Interestingly, my Dad thinks he has ASD but isn't interested in a diagnosis as he's held down a job since he left school and has been married for forty-odd years and feels his life has been successful. It would explain a lot about his parenting style, though! 

Hi dadof4

Thank you so much for your comment, I have been looking at the Incredible 5-Point Scale on line and will certainly be ordering it.

You are the first person to actually say to me "this is something you can try" so I am very grateful.

All the best to you and your family.

Hi JD18

This is a very familiar situation.  Children with AS oftern have meltdowns often for seemingly no reason.  If you think of a stress scale most of us fluctuate at the lower end of the scale on a day to day basis.  Often children on the spectrum are highly affected by anxiety and this sometimes seems to make them more autistic.  At times of anxiety they may be operating at a 7 or 8 out of 10 and this means that seemingly minor situations easily tip them over the edge.

With regards to helping to deal with social situations a really good tool is the Incredible 5-Point Scale.  You can come up with a variety of situations which might cause your child stress and then rate them between 1-5 1 being more happy activities and 5 being explosive situations.  There are books on the topic and lots of info out there on the web regarding these scales.  It is a very versatile tool which can be used for a variety of behaviours and concerns.

Hope this helps

Hi Hope

Thanks for you post.  I think you are right.  We were also told that my son was emotionally immature every year through his primary school years.  They did offer support to him but then he has always been a high achiever so read into that what you will.  Almost every person I have met with AS feels positive about having that label and it seems to be really important to them.  I feel that by being told you have AS it gives you some meaning and purpose, and gives you a message that there is still hope.

A diagnosis can be very important for a child or adult with AS. I only wish that I had been diagnosed earlier as I am sure that my OCD and phobias could have been controlled, and may not even have developed, had the right support been put in place. I still harbour a great deal of anger with both my primary and secondary school for hardly paying any attention to my difficulties. For example, I received an assessment when I was 10 years old and the report said that I was 'emotionally immature' with contamination fears and that I spent ages hand washing. The report advised the school to implement emotional support, but this did not happen!. The school I went to just focused on the high achievers, and the only explanation for my difficulties was that I had  difficulties with organisation and spatial awareness. I had no answer for my difficulties making friends until I finally received a diagnosis of AS three years ago. I thought I was messed up, a horrible person, completely alone in the world. Nobody should have to go through this

Hi dadof4

Thank you for your reply.

My son is exactly what you are talking about - high functioning, doing well as regards school work, he just can't seem to deal with sometimes some very trivial situations eg yesterday we were out at a park and there was a bouncy castle the type with a roof and a door and because there were two other children coming off while he was trying to get on and blocking his way he had a complete freak out, stomping off shouting, screaming and crying real distress and this is the sort of thing that happens all the time. He is better if he can be prepared for things that may happen but of course you can't prepare him for every little eventuality. I say it's him that needs help but it's probably us that need the help in helping him to manage, its getting to the point of us not going out as much and just avoiding situations which I don't think is the way to go.

I'd be interested in your opinion. Thank you.

Hi sanders

I agree.  My daughter has a number of traits as well but does not seem to have the same issues as her brother.  We are not planning on getting her assessed as we do not feel she needs additional support.  My son who does have the diagnosis of AS has very specific issues around his emotional maturity and social norms.  He stands out as being different and we felt it necessary to find out why and for him the label has helped him to understand himself much more.

My wife also has a number of traits nad has scored very high on Simon Baron-Cohen's Autism Quotient Scale which can be a good indicator of someone being on the spectrum but again, she copes fairly well in 'normal' life and we don;t feel that she needs to be assessed.

Hi JD18

My son was 8 when he got his diagnosis of Asperger's Syndrome.  We have managed to support him ourselves as he is very high functioning and does not need the support in school.  Top sets and glowing reports from all his teachers.  There is not a great deal of support where we live although things are improving slowly.  I work with families and come across a lot of families with children on the spectrum so have some experience of supporting families and children with the condition although most I come across are high functioning but have issues with social skills and behaviour especially around times of anxiety.  If you want to ask any questions I am happy to try and offer you some advice or at least signpost you to some useful resources.

I am in two minds as my son is going through the full diagnosis process at the moment but we have been told that he is either high functioning or asperger's . I think it is important for a "label" to allow him to access to the help that he needs and for other people to understand why he is the way he is .. I also have a 12 year old daughter who i strongly suspect has mild aspergers and she doesnt cope with certain aspects of life but manages to get through ..we have refused a diagnosis for her as I dont think it would be beneficial for her as she copes well at school .

I think it definately depends on the persons abilty to cope with everyday life

x    

Hi there,

I am in agreement with you that getting a diagnosis is important. My reasons for thinking this is for ourselves to know that we are not completely useless parents and there is actually a reason why our son behaves as he does and also for him to as you say not feel so lonely and isolated, I feel it can only be helpful to him to know he is not the only one and other people are going through the same frustrations as him.

My son is eight now and we still haven't had a proper diagnosis, we have just been told as I said in my last posting that he has definite aspergers tendancies and will be assessed again when he starts senior school. I don't know what your experience is but here there seems to be very little help or advice, we are left to get on with it which is why I've joined this forum.

Thank you.