Lyndalou

My sentiments exactly. Perhaps some people can say 'Hey, I've just found out I have Aspergers and that's ok, I'm fine with it because it explains everything' and then just carry on with their lives as they did before. I know someone in real life who this is true for. They're not happy about it and they're not sad about it - it just is. Both her children have now received a diagnosis and she (seems to ) take(s) it in her stride. It's not been like that for me and probably not for a lot of people. My husband, at the height of my anger and confusion, kept saying that he didn't understand why I was not just relieved to find the answer to the problems I've had in life. However, I think that part of it was that it came as such a shock and the answer I got was not the one I expected. For so long I was told that it was 'all in my head' and it was my only perception of reality and not what was actual reality (when I believed I had upset people and was obsessing about it or felt that I didn't fit in for example). I am chatty and friendly. I'll talk to anyone and everyone (when I'm in the mood to) and I enjoy finding out about people. It did strike me as odd that in a one-to-one meeting I could get headaches with prolonged eye contact but I put it down to my poor eyesight and concentration... Even now, my communication prohibits me from being believed by many people and that too is extremely tough. The summer after my realisation even watching the children playing in the street upset me. The girls were all 'girlie' and played together doing 'girl' things with their pretty hair and pretty clothes and I saw visions of myself looking (as my mum put it) 'like I'd been dragged through a hedge backwards' when I was the same age with my hair hanging in 'rats tails' with bashed up knees and cardis buttoned up wrongly. It's not like I ever wanted to be like them but the absolute difference between the two pictures made me realise how different I will have looked at times to my peers. I suddenly understood that autism was the reason I loved being by myself and why on the occasions I went to visit classmates homes that I was struck dumb because everything was so 'different' to my house. I suddenly knew that it was the reason I didn't know how I was 'meant' to play in a Wendy House and why I dulled the pain of losing my real best friend who ostracised me from the rest of my class by creating an imaginary friend, although even he got in the way of me doing my own thing! It takes time and a lot of energy to work it all through. Having a child (or two) with ASD can force you to live your life in parallel to them - you see yourself at the same age and although it helps you to make sense of your child's problems (which is a huge bonus), you have to at the same time relive your own life and when a lot of the life you've had has been painful then you have to relive that pain too. I accept my child needs time to himself because I remember all the time I had to myself. I fight to ensure that my child's teachers treats my child with respect and understand his difficulties because although some of my teachers may have 'got' me and helped me achieve my potential, other teachers bullied and damaged me. I feel the pain my child feels and see the confusion on his face when peers ignore him or even sneer at him because all of a sudden I know that there have often been times that I have been treated that way too. Lynda

It's on the thaw up here but by all accounts torrential rain is on the way. It snowed all yesterday, so much so that my son went away on his school bus at 9 and by 11.10 he was back in the house because they decided to close early...bit of a waste of time going in really! Job for today...clearing the trampoline of snow so the munchkins can have a bounce .

Hi Kitty Have you phoned the National Autistic Society Helpline to ask for some advice? If you go on their website you can find this number and also lots of information about what Aspergers and Autism is and the various 'symptoms'. They also have information or suggestions about how to go about asking for a diagnosis but I would suggest you actually speak to someone for advice too. If your mum is supporting you in this it will also be very helpful as normally parental input is required as part of the diagnostic process. Lynda

Hi Caroline If you are worried then it won't hurt to ask for some advice. Remember that girls can be a bit different to boys in how they 'present'; eg. it is thought that girls can appear more social at times than boys and their interests may not be as glaringly 'unusual' as those of boys with ASD. However, some of what you describe is similar to my son. For some time he would refuse to eat broken biscuits and how food 'looks' is still quite a big issue. Also, my son would get upset if he was splashed with water as he descibed it as 'dirty' but in short it was just not meant to be there and often when he was splashed he was taken by surprise and this in itself was upsetting. If she is getting very upset at the prospect of going visiting, can she explain why this is? It does sound quite unusual that she requests they don't speak to her. Maybe bring it up with the Health Visitor? Lynda

Well put. Very difficult to put into practice but I've found that taking a step back, especially in 'fraught' circumstances or when you really want to say your piece but you just know it's not a good idea is the best way to play it (for me)!

....and a 1kg bar of Galaxy...stuff that superskinny model-type on the Galaxy advert nibbling on one little bit - it goes in 3 pieces at a time! My son's music teacher emailing me today and telling me I have two 'adorable children'...little lump in throat

Some of mine overlap with yours Matzo... Chocolate (I have recently rediscovered the pure joy of eating straight from a jar of Nutella) Going to the movies Watching my daughter crinkle her nose and look indignant Walking through a quiet wood in summertime Good food (but not cooking it) Reading a good book and especially one I didn't expect to like Cranking up dance music I'm far too old to appreciate in the car

I'll come back to this because have to get ready for school... <'> All I can say is that I completely understand. There have been periods over the last 2 years that I have felt similarly to you and for me I've felt that I am at times stuck in a no-man's land. Grief is a normal reaction and it's something you may not be able to fully describe but I feel it in your post and I do admire you for putting how you are feeling 'out there'. There will come a time that you will reach more of a level of acceptance and then contentment....I'm not there yet myself but I bounce about between all the emotional states and I'm sitting much more at acceptance and contentment than at grief these days and it's all part of the process, I think. You are capable, smart and you've achieved a lot in your life despite your difficulties. Be proud of yourself and don't give up.

Alex I would say that I've learned a lot simply by making mistakes. Sometimes it is a good thing to experience what can go 'wrong' in order to make it 'right'. I can look back in my life and I see all the connections. I see all the problems I've had, all the successes and failures and all the good and poor decisions I have made and connect them all together and now everything makes a lot more sense than it used to. I've maybe not gone in a straight line but I've made some progress along my own personal life journey. All the way through my 20's in particular I felt like I was going nowhere and worse still I often I felt like I was running just to stand still. It was completely exhausting. I've variously called those years my 'wilderness years' and my 'steep learning curve'. So, I have a bit of an idea of what you are describing... At the start of your journey you can't predict what it is going to be like. You may know where you want to go but you might take a detour and go the wrong direction and then have to get back on course again, you might hit road bumps and incur some damage and you might have to sit for a while waiting as something blocks your way forward. Sorry about the travel cliche but I think it is like this! Good Luck with your journey Lynda

It was suggested to me (I can't remember by who) that it would be helpful for me to see a social worker to find out what services and monetary help were available to my son on his own and to us as a family. Towards the end of last year I was interviewed by a social worker for the Children's Disability Team who was very approachable and knowledgeable about services in the area. Her role is quite different to social workers who are part of a Child Protection team, ie. her central focus is not on protecting the child or monitoring difficulties within a family but is to provide information and support. For us, it was felt that it wasn't necessary to have a permanent social worker as things are going well and my son already accesses a lot of activities which aids his development and I chose not to access support workers. However, in order for us to get access to certain services we need a social work referral and the referral cannot be made any other way. Therefore, we are due to see the social worker again to fill in the relevant paperwork for a referral to a social activities group which runs locally.

It may be a good thing that they are asking further questions to help aid them in their decision-making although I would hope that these questions would be relevant to making a decision as to whether or not your son requires an assessment for ASD. The question about your son's eyesight might be relevant with regards to his general development and may be something that is considered if he has noticeable lack of eye contact. However, eye contact is only one of a number of indicators of ASD and in fact some children can have too much eye contact not too little; it's anything that falls outwith what is considered to be 'normal' development like problems with speech development and other communication issues, delays with development of personal care skills, eating problems etc The fact that you are keeping a diary of 'unusual' behaviours is good if you want to provide examples to professionals of your concerns.

What kind of support EXACTLY are you looking to access Smiley? There are types of support/therapy that can be accessed through mental health services which can provide help in working on general coping skills and issues surrounding anxiety and depression. I have been referred for these myself and have found them helpful but it is fair to say that not everyone would feel that way or that they are appropriate for everyone either. A lot of the time they are not ASD specific but there can be many helpful strategies used in traditional talking therapies that can help a person deal with and face up to their ongoing issues. Can you focus on the positive like your upcoming trip which sounds like something very good to focus on?

Sounds great! I'm sure you'll have a lovely time

Hi Kath I think the process happens differently in different areas so there is no set 'timeframe' with regards to diagnosis unfortunately. I am imagining that your son's referral has gone in front of a panel for them (whoever they are) to discuss whether or not he needs to be formally assessed and this is a very good starting point! If you feel in the dark about what is going on then you have every right to ask for clarification about who is involved currently, who will be involved in any assessment, what the assessment is likely to involve and when it is likely to take place. If you have contact with the woman who is in charge of school age referrals - what is her role and will she play an active part in the assessment process? - it is probably sensible to approach her again with these questions. Your first question may be about what the panel were making a decision about, ie, have the panel made a decision and is this with the purpose of organising an assessment. When I got this information with regards to my own son's assessment (if I remember correctly), I then had to confirm attendance at the assessment and then I was sent an assessment pack which provided information about who would be assessing my son and when during the course of the process. My son was assessed at a centre which specialised in conducting developmental assessments which sounds similar to your own situation. The 'not knowing' is very hard...I remember it well. Try to find out exactly what is going on and it'll become a bit easier. Lynda

A little break might do you the world of good Smiley and I'm sure your aunt will love to have some company for a few days. Maybe write all your plans down with regards to your travel - stops etc and pick up times - so that you can be as organised as you can and refer to it on the journey and you'll be less likely to panic (I used to travel a lot by bus and train so I know that feeling well!). However, it sounds like you've got it covered already so have fun!

Yep, I'm an absolute control freak in so many ways. It took me a very long time to actually recognise that....one reason I started to see what a control freak I am was when I designed and printed out all my wedding invites (and there were quite a few) and when I checked them over and found the text to be off-centre by c2mm I completely freaked! My husband (to be) got a mouthful when he told me this was a disproportionate reaction but after I had redone everything and had calmed down I had to accept that I'd overreacted. After this, I started to realise more and more instances when I had to be completely in control and the reason for it is that it makes me feel valid and capable. As soon as I'm not 'in control' I have to fight feelings of inadequacy and of being incapable which I can't always control even though I know how irrational it is. A lot of it is to do with problems with organisation and sensory issues. If I know where everything is then I won't panic as much. If I know that I'm ahead of the housework then I'm not bombarded with looking around me and seeing mess as far as the eye can see. The good thing about recognising it though, for me is that I have learned to 'let go' sometimes. Mostly though I'm wound as tight as a spring!

It sounds like you are doing all you can for your little man and thinking about what is in his best interests now and in the future. Keep trying to get all the answers you can and support you can

Well, it's snowing lightly here at the moment and the snow has been lying for more than a week around here. A few days ago it took me half an hour to de-ice the car but since then it's not been so cold, if that makes sense. I was out with the snow shovel a couple of days ago because the snow banks up at the bottom of our drive and compacts so I didn't want to be stuck. Both the kids now have their snowboots but it's proved a difficult task to find a snowsuit for my daughter! Turned up at toddlers this morning and it was off. So, it's probably a problem into the countryside round about as the woman who runs the group calls off toddlers when the schools are closed and her kids go to a country school. By all accounts a blizzard is on the way.

I think Trekster's set the ball rolling so here goes... I'm a married mum of two with one ear on the baby monitor, a continuous supplier of drinks and snacks, the person who picks the Peppa Pig DVD's off the floor and cleans them off, housekeeper and nose wiper. I've had a keen interest in mental health and in general how people 'tick' since my late teens. I gained a Fine Art Printmaking degree at the age of 22 and thought initially about becoming an Art Therapist but then followed a number of years of different jobs in different sectors; everything from a BT operator to a worker in an industrial laundry, a stint of nursing training and a PgDip in Heritage Management before I worked in an area close to using art as therapy. In my late 20's I eventually got a 'real' job when I worked for a mental health Social Enterprise as a Workshop Co-ordinator of first a paper workshop and then a picture framing workshop, the second dealing directly with the public. It is fair to say that this was probably the steepest learning curve of my life for many reasons! I then worked as an Advocacy Worker, advocating on behalf of older people with dementia and their families. It wasn't a good start when a senior Social Worker complained about me to my manager in my first week on the job saying that I had no idea that people with dementia had memory problems (insert indignation here). I've been very lucky since I met my husband to be able to travel a bit. I love now seeing in the flesh what for many years I only saw in books. Highlights include Pompei and Barcelona and as a family we've gone to 'far flung' places like Yorkshire, Cornwall and Caithness. Mostly though, I just watch CSI, Criminal Minds and Bones on telly, zombie flicks and I'm looking forward to the second series of 'This is Jinsy'. I'm a self diagnosed Aspie with a high functioning autistic little boy and an apparently NT daughter. On paper, I'm officially autistic 'some of the time' (yep, makes perfect sense ).

We are very lucky to have this school locally for children who have a range of special needs. The school caters for children from nursery age to 18 yrs and the catchment area is quite wide and the LA provides transport by minibus to the school, even those who live in the town like my son. The school is not ASD specific but there are a lot of children with autism, particularly in the younger age group. My son, as a result is in an autism specific class. He is one of six boys who have a teacher and 3 teaching assistants. In addition to this weekly he has one-to-one sessions with a speech therapist, 2 swimming lessons, gym class and access to a snoezelen room. He goes walks into town and also into the country on bus trips. In the lead up to attending nursery, we had input from the Educational Therapist, Pysychologist and Paediatrician. The EP continued to provide input prior to my son being accepted into P1 (reception) at the Special Needs school. Everyone was in agreement - nursery teacher, EP and Speech Therapist (among others) that this was the best placement for him especially with regards to his level of understanding, his speech disorder and his sensory difficulties in particular.

Bear in mind that you may be able to request that he can repeat the year. You certainly can do this here and you may be able to do this in Wales. This could probably apply at the same school or at another school if you feel that this would be helpful for him. I've been told that this would be an option for my son if he moved from his Special Needs school into mainstream next year (although this is unlikely).

That's very kind Jeanne - I think I'll need a bit of direction with the 'technical' side of things and it might take me a while to catch on with that as it's not my forte! Glad there's a few of us....that's what swung it for me