New and Needs Advice Please

Hi...Aspergers is Aspergers, and although your son's symptoms may be mild, it doesn't change his condition!

my 10 year old daughter was diagnosed a year ago.  Her biggest issues are concentration and organisation.  If the classroom is too light/hot/noisy it is really hard for her to work.   She was diagnosed by a private clinical psychologist who came into school and met with Form teacher/SENCO and other staff to talk through useful classroom strategies for her.  As she is a fidgeted, she has permission to have a 'fidget toy' to play with to ease her anxieties.  The hardest area is obviously in the playground which is not as carefully structured or supervised as the classroom environment.  All teacher in the school are aware she has AS and she has been givenpermission to come into the building at break times if she needs to get away from the playground.  She does like to feel in control and is very sweet with younger children so she has been given duties as a 'helper' with the Reception childrplaytime real time each week.

For her, she doesn't want to be seen to be treated differently, but obviously does need special strategies.  It would be worthwhile discussing these practical steps with your school SENCO as well as an IEP for the classroom.

As hersymptoms often appear mild at school (home is where she can really let loose!) it is difficult for teachers to recognise and remember her daily struggle to function in the school environment.  This is possibly similar for your son so regular contact with the form teacher/SENCO is advisable, even if it is you who has to initiate.  Perhaps it is worthwhile smeeting up some regular termly meetings other than parent/teacher consultations just to keep the need for dealing with AS difficulties fresh in the mind ofstaff.  

I am sure your son will continue to do well in school.  Communication is key...I keep reminding my daughter to talk to any teacher if ever she is worried about ANYTHING.

Thanks for the comments Whiterose.  Don't worry about the length of the note, I appreciate the detail.  x

I've found it quite difficult to talk about until recently, but I now have a friend who is also on the spectrum and she's helped me become more comfortable with it.  But because I'm not used to talking about it, I may well forget things when I'm explaining how it affects me, so I may end up adding to this later... I struggle with eye contact, and I do talk too loud at times and hate it when people expect to talk in what to me are whispers... I get wound up easily and can't take any teasing and this was a major issue at school but not so much now when I'm almost entirely around other adults... I find social situations difficult, mainly because I find it hard to sit/stand and talk about things that don't interest me... I find it really hard to sit still for long and my mum and dad yell at me for walking up and down in my room.  I don't like having a plan for a day and then having to change it without much warning - this is difficult at work sometimes when I go in expecting to do certain jobs and then have to do something else, although I'm working on trying to be more relaxed about it.  I find phonecalls difficult, mainly because I hate not knowing what to expect - I manage okay-ish taking incoming phonecalls at work but still struggle with making outgoing calls and I try to avoid using the phone at home unless absolutely unavoidable.  I struggle with being able to cry - I can cry over a book or TV programme when they're sad, but otherwise I find I often can't cry when I want to, although thankfully this hasn't affected me when people close to me have died, but I can remember when I knew my Nan didn't have long to live - I was 17 at the time - I was terrified I wouldn't be able to cry, and was hugely relieved that I was able to cry when she died.  I do find I click my fingers a fair bit, although this tends to happen more when I'm alone, although not entirely because mum does pick me up on it sometimes.  I do have my pronounced interests - history and sport, particularly motorsport, but I do know people, especially in the case of the latter, who are as into it as I am who aren't on the spectrum, so it's not the depth of my interest that is related to my Aspergers, it's the fact that I don't have many interests.  I tend to hesitate and put things off when I'm not sure what I'm doing as I'm worried about getting stuff wrong.

As I said, I may have missed things - one day I need to sit down and make a comprehensive list because I do want to be able to talk about this and it not all come out in a huge and possibly incomplete rush.

In terms of how it's affected me... at school, I was always pretty good academically, and although there were some things that weren't perfect - my idea of notetaking was to copy entire sections out of the textbook, and in science classes I would often wait until the teacher went through the answers for an activity to write anything down, so I was sure my notes were right - I was usually happy with my schoolwork, helped by the fact that I had a really great memory, especially for factual stuff, that meant that even for my GCSEs, I only had to read through my books once on the night before my exams.  I got 9 GCSEs - 5 As, 2 Bs, and 2 Cs, and the equivalent of three A Levels (one subject was a double award) - a B and a CC.

Socially, school was a nightmare.  I have one friend from school who I've kept in touch with, but that's it.  I have other friends - mostly made through motorsport groups on the web after I left school - but I was so glad to leave school.  I was at a good school, and they did try, but the fact that the teasing was such low level made it difficult for them to get really stern with the culprits.

It took me a long time for me to get a job - 18 months after leaving school - but during that time I did voluntary work which really helped me, and eventually I did find a job.  It's part time but my hours increased when the company expanded and hopefully will increase again as the company continues to expand.  I've been there for over three years and my colleagues are wonderful and really understanding.

Although I've got involved with some activities now socially - church and a history group - the people are older than me, and I wish I could mix more with people my own age, but I'm not really sure where to start.

On the positive side, however, I am able to manage by myself to do a lot of things - although I still live at home because I don't earn enough at the moment to leave, I am able to go on trips by myself and have been on holiday to London by myself twice.

I realise that I've probably written more of the negatives here than the positives, but when I talk about my Aspergers and how it affects me, that's what I end up listing, and the many ways I'm NOT different end up getting omitted... I am a lot closer to "neuro-typical" (I love this phrase, another thing to thank my friend who I mentioned at the beginning for because having to use "normal" for non-spectrum people made me really uncomfortable, because I hated thinking of myself as not normal) than I am to the more severe end of the spectrum.

Sorry for rambling - that's another couple of things to add to the list - I don't always organise my thoughts very well, and when I start talking I can sometimes go on for ages and end up quite a way from the original topic!

I think you've done the right thing about telling him - the foundations have been laid, which is good.  I'm adopted, and I've always known that, and then my parents told me more at an age appropriate level; as I got older, and answered any questions I had.  I'm sure your son knows he can ask you when he needs to, and I'm sure as he gets a little older he'll get to the point when he wants to know more.  Or maybe that's how girls brains work and boys are different.

Sorry for the length of this...

Hi Whiterose, 

Thanks for your post!

We have sort of tried to explain to our son, but its difficult for any 8 year old to understand, so we havent pushed it.  If he ever starts to have any problems, or asks questions then we will tell him again.  At the moment we have tried to explain that when we went to see the doctor, they told us that he may find somethings easier than other children, like using clever words, but may find somethings more difficult, like writing. We have also tried to explain that he may have different interests to his other friends and it is nice to be socialble and try to be a little interested in their things as a way of being polite.  We also try to discourage him from taking his teddies out with him, trying to explain that other boys the same age may take a teddy to bed, but may find it a little babyish to take it outside, so best to keep the teddy safe inside.  We have tried to explain that all of these differences are because the doctor has said he has something called "Aspergers" but it isnt anything to worry about, or to be ashamed of.  I think thats as detailed as we can go with him at the moment.

Out of curiosity, with you saying that your's is really mild too, what were/are your "Symptoms, traits", (whatever the best word is!)  How has effected you through your eductation/life in general.  (Don't mean to pry, so you don't have to answer, but I am obviously just interested to know what it is like from someone who may be similar). xx

Hi Ballerina,

I was diagnosed at 8, and am now 23.  Like your son, my Aspergers is pretty mild - mum's always said if there was a scale from A to Z with A being the mildest and Z the most severe, I would be a B or a C.  I never really struggled too badly academically at school - it was socially I struggled, and my teachers never really seemed to understand quite how hard I found the teasing, and how stuff that would go over most kids' heads was torture for me - but one thing I would say is that if you feel he is able to cope with it, it might help to tell your son about his diagnosis sooner rather than later.

My mum told me when I was 13, and although I totally understand why she felt I wouldn't have been able to process it at 8, I wish I had known before I went to secondary school.  It wouldn't have prevented the teasing, but it would have helped me cope with understanding why I sometimes did things that once I'd had time to think about it, I didn't really want to do - I'm a stickler for rules and hated that I couldn't stop myself breaking them sometimes.  I also found that once I knew, I was able to manage my thought processes and although my problems didn't disappear, I was able to manage them better, and learn to control my feelings more.

Obviously you know your child and will be able to judge when the time is right, but I just thought I'd let you know my experience, especially as I was diagnosed at the same age.

Hi Pauli,

Interested to hear your son has OCD around germs - one of my big problems. When I was at school I got really anxious around people coughing, sneezing or saying they felt ill, and I just could not concentrate on school-work, worrying I would catch the illness. I am not so bad now as have received CBT and lots of other support, but I still have contamination issues: over-washing vegetables, avoiding people who are ill (but can be around people with colds now), washing hands and cutlery over zealously. I also have  fire OCD, worrying that the house will burn down, obsessively checking oven and appliances. I am far worse when I am on my own in the house. What sort of germ OCD has your son got?

I also obsessively check food use-by-dates

My husband is the opposite ballerina, he encourages her, he still has alot of his teddies from when he was little, she's 'adopted' many of them but he still sneakily takes them to bed sometimes (pretty sure he is on the spectrum too but he won't seek diagnosis as he has no faith in the system). I have to sneakily get them out of the house, I go through her bears every few months and sort them into piles of "loves to death and would know instantly if they were gone" "Loves them but doesn't play with them as much as the others but will undoubtedly notice them gone" and "I don't recall her playing with this one for a while" and the ones from the last pile get put into a bin bag and hidden away in her wardrobe for 4/5 months if she doesn't ask for any of them I then send them on to her uncles house to live in his spare room for a year and then and only then can we get rid of them. As you can imagine this is a very long process and in the meantime that bag of teddies in the wardobe will already be partially replaced by new ones. I sometimes get her to join in with the' out with the old in with the new' clearing. She will quite happily get rid of lots of old toys before birthday/xmas etc but teddies are a no go area, you can pick any up and say can this go and that will no doubt be one of her favourites(even though it's been buried at the bottom of the pile on her bed for months).

We use toys/teddies as rewards for good behaviour/encouraging things. She had a martial arts grading on sunday and if she's having a bad day she will not do it whatsoever, we already forsaw probelms because she had a small cut on her arm from the day before(she has real problems with pain) and she was saying she might not be able to do it because her arm hurt. So we said if she did really well with her grading that we could nip to the shops and get a small teddy, she totally aced the grading and skipped a level.

Upset with trivial things is a very familiar thing for me, my daughter can become so upset over what seems like such an absolutely ridiculous reason. Although as I've come to notice more and more alot of the time it will because of having a bad day and so she's in a sensitive mood and the slightest thing can have her crying hysterically or screaming/ranting.

My daughter's school has a traffic light grading system and in previous years she was always green for everything wheras on her latest report she had a number of ambers and I know it's all related to her not being able to concentrate because of sensory overload.

Hopefully the school will be able to accomadate your son alot more now he has his diagnosis :)

Hi Pauli,

Thanks for the advice on the books, they sound fab. I will definately have a look on Amazon to see if I get find them.  I love the connection between a cat with Aspergers and a puppy with ADHD!

I spoke to the secretary today who will be typing up the letter from the Doctor.  We should have our letter tomorrow, which will be the official diagnosis.  In someways I am looking forward to seeing what is says, whether it is straight forward Aspergers or whether she describes it a "mild" aspergers as she implied in our meeting.

Thanks again for your interest and advice. x

Hi Hope

I am sorry to hear that you experience has not been a good one. I have to say "Well done" though for developing strategies to cope - that is a difficult thing to do.My son also needs lots of time on his own and finds social events really trying- in fact he avoids them like the plague!!!But as I say to him lots of people need time on their own not just aspies.

My son is OCD about things too - germs being a big one. Help is out there if you feel that your OCDS are impacting on your life too much.

I sense a feeling of deep regret in your message - but I may be totally wrong.Don't look back - keep looking forward. You are only twenty five - you have a lot of lovely things to look forward to. A great book to read is "Alien in The Playground" written by an asperger's adult and has lots of life experiences from other aspergers adults.It is a good book for giving encouragement.

Embrace your aspergers -  don't camouflage it ! Aspergers people are just wonderful special people. If I was given the choice of spending the day with a large group of Aspergers people or a group of so - called "normal" people - the aspergers would win hands down!If you open up about your aspergers you may find that other people you know are in the same position.

Look at how much you have achieved by yourself - be proud of you!! x

Hi Ballerina

I have just thought of two really helpful books that I have used with my son and in my job as a teacher to help other parents. One is called " All Cats Have Aspergers Syndrome" which is a lovely book of cat photos and an explanation of an asperger's trait. My son loved this book as it helped him to understand how different he felt. There is another book in the series called " All Dog's Have ADHD". They are great books-my old cat certainly has aspergers and my 5 month old puppy is definitely ADHD !!!!

The other book is called " Alien in The Playground". I read it when my son was first diagnosed and like you I was feeling torn,guilty and worried for his future. This book is written by an aspergers adult and gives accounts of other aspergers people lives and how they coped with it at school and as adults. This book certainly gave me hope for Angus' future as I did worry about how he would cope career wise and in his relationships.

Hope this helps!

PS Angus has always had an amazing sense of humour too! They never lose it as he is still the same and has us in tears of laughter on a regular basis!! One of his primary teachers loved the fact that he had a mature sense of humour because when she cracked a joke in the classroom he was the only one who laughed!!!

PPS Labels are good as it gives you more clout to get the help he needs x

Hi Azaezl,

Thanks for your comments.  Our son would have hundreds of teddies if we let him, but my husband has always been a bit strict not letting have too many.  I suppose it is a bit different with girls, you kind of expect them to have lots of teddies.

However, it worked a treat this week, because he really wanted one of the olympic mascot teddies. We said if he did all his homework this week, without moaning, and tried hard, he could have one.  He insisted on doing the whole lot of home work in one evening! (So there are some benefits!)

He doesnt really seem to have any outbursts as such, but can be really really upset with trivial things, especially if he thinks he has upset someone else. He once sobbed uncontrollably, as though we were beating him or something, because he had accidently pushed one of his friends (a girl) over in the playground. He didnt get into trouble and the teacher new it was an accident, but he was heart broken.  Bless him!

He has had his school report today. If you image 4 grading boxes.  The first box is the lowest, "needed support", the next was "progressing", the third was "achieved" and the last "excelled".  He got the lower two boxes for everything. But all of his school reports have always said that he has a fantastic sense of humour, and that they know he can do well.  Its so frustrating, its as though its all in their, but he can't put pen to paper.

Hopefully, when your daughter gets her diagnoses, she will get the help she needs.

How did it effect you through life?

Hi Ballerina,

I have a 7 year old daughter who I'm currently trying to get a diagnosis for. I myself was diagosed with asperger's in may at the age of 28 and I'm 99% sure my daughter is on the spectrum too as she is more or less a mini me.

My little girl is obsessed with teddies, she must have well over 100 on her bed each with it's own name and she will not give any up. She also has a further 200 or so spread out in relatives homes. Her 2 favourites are some she has had since she was a baby there is 'teddy' and 'little oof' and they go EVERYWHERE with her, apart from shcool but whenever there is a school function we have to take her teds. She's our only child so we don't know what is age appropriate etc because she still loves to sit and watch things like Peppa Pig, Ben & Holly, Justin's House etc but she also likes what I assume are more her age things such as the amazing world of gumball (she's stuck on that at the mo and watches the same 2 episodes over and over again), monster high and power rangers(but only Dino Thunder, she will rant on at you about any other power rangers not being real ones).

School wise my daughter was above average for reading and writing but her sensory issues are causing her to fall behind (well not behind she's about average now compared to 6 months ago). Her maths however she is well below average and the teacher thinks my daughter has no understanding of the value of numbers which isn't true she just becomes easily frustrated and overwhelmed with maths and as a result shuts down and can't think. She also needs alot of visual aids for maths which are not always available to her so she's struggling.

Socially she is okay, she has lots of friends but she is beginning to struggle with them because she(in her words) can't always understand what they mean. She also sometimes has obsessions that are not acceptable in her peer group (such as being obsessed with Michael Jackson and her peers have no real clue who he is). When she is overwhelmed she can become verbally abusive and unfortunately her friends have been on the receiving end of her outbursts which has caused a rift for a few days. She can also be very strict with the way she plays and will get very angry if rules are broken or things are not played correctly which again causes tension with her friends.

Hopefully now your son has a diagnosis he will start getting the help he needs :)

Hi Hope,

Thanks for your comments,

Again, your comments about being immature sound familiar, but so far my son doesnt have any obsessions in anything of any educational purpose.  ie. he is just interested in pokemon or teddies, not anything like the human body.  Luckily, he hasnt got any OCDs at the moment.  Fingers crossed, they will miss him out.

I am glad you think it was right to get him diagnosed.  We were a little torn at first.  Firstly, we didnt want him to have label, but then we felt that if he had a label at school, he would get more help, and secondly, we don't have to broadcast his label to everyone else.

I hope that now you know what your issues are, that you are now able to overcome them.  Good luck in all you do for the future. x

Hi Pauli,

Thanks for your comments.  Your son sounds so similar to ours.  Knew something wasn't quite right but not quite sure what.  My son doesnt show many symptoms, other than the twiddling, teddies and the struggling a little with school work, so think that is why they have called it "mild" aspergers, but obviously, we are aware that there could be more bridges to cross in the future.

Our son is also really lovely. He is so gentle and soooooo funny!  He has me and my husband in fits of laughter with quite adult humour that perhaps other children may not get.  Although, so far, the kids at school seem to find him funny too, in a nice way.

I definately intend to have regular reviews, and luckily his new teacher for next year is straight out of uni, so I am hoping that she will be full of enthusiasm and will give regular updates in his homework diary too.  Fingers crossed, she will be full of dynamic ideas that will stimulate him! 

I love the passport diary and will definately look into that.

Thanks again for your comments.

x

I was diagnosed with Aspergers 4 years ago (am now 25). I think my aspergers is what would be called 'mild', although it does not feel this way!. I have learnt very effectively how to camouflage my aspergers, and have learnt the rules of conversation. I have learnt to make eye contact, ask people questions about their life, smile and be social. I have not always been like this - I developed these skills very recently, only really since University. However, socialising can be very stressful and I don't have any close friends, although I have many acquaintances. I need lots of time on my own to do my own thing, need routine and have to plan everything in my life.  I had an extreme obsession with the actress Kate Winslet as a teenager as well as child development and babies!. as a child I was into food and the human-body. I also have bad anxiety around health, body functions, OCD and contamination - the OCD is more disabling than my aspergers. I have had OCD since I was 7 years old, but have always had phobias and anxieties.

At school I was an extremely good reader, 5 years in advance of my chronological age, but had  minimal comprehension. School were concerned about this and I was tested age 10 by an Ed Psych. I had a high verbal IQ but very low performance IQ, so they could not give me an average IQ. I struggled with Maths, coordination, and spatial awareness. School were advised to get me Statemented but they did not comply. I wish I had a Statement as I might have got the help I needed. I also wish that I was diagnosed as a child. I was always wrongly called a 'shy', 'immature' child. My parents have always had concerns but were not taken seriously.

Hi

My son was diagnosed at nine although I always knew something was not quite right. It took four years to get the diagnosis.My son was always young for his age - playing with my little pony at 7 and obsessed with wrestlers figures later on!I am not sure about the mild aspergers -perhaps they meant it as a guide to where your son is on the spectrum. My son is now 16- he managed primary fairly well although I had to push to make sure everything was done correctly for him and that teachers knew exactly what he needed or couldn't cope with. Some teachers actually told me he didn't look like an aspergers child!!! Don't know what they expect him to look like!!I just made sure that all staff were aware, asked for regular reviews and updates with the school and watched my boy for any signs of distress.My lad loves languages and had a great vocab at a young age too.It was only when he went to high school that my boy developed problems. The school was too big he couldn't cope and became very depressed .But help is out there and he is much better now.

My advice is don't let anyone fob you off just because his aspergers is mild - aspergers is aspergers- and " Aspies" as my son calls himself are very special people!

Push for any help you think your son may need - it is his right and yours!

An idea to let new teachers know is to make a "Passport" for your son. Basically this is a little booklet that you make up with your son including photos of his favourite toys,books etc. Include a section on things he likes, things he doesn't and things that may upset him.He can then take it to his new teacher . Hope this helps!

And don't forget - you are not alone! It can be a long road but a rewarding one! I have had many bumps along the way with more to come !! But at the end of the day I have a lovely 16 year old lad with his own quirks and eccentricities and I wouldn't change a thing!!!