Female Forum

I have 2 little girls aged 6 and a half and nearly 8. My eldest daughter was diagnosed with aspergers syndrome just over 2 years ago. I would love to chat to other parents in the same situation. Kez x

My family is full of children and adults alike diagnosed with Aspergers and two with Autism. Happy to chat with you Kez about any of it. 

WOW! You must have the patience of a saint! How old are your children if you dont mind me asking? Are there any females? My daughter Neeve is now 8 [on the 8th of september] and i do worry about how she will cope as she gets older. I started a support group for parents of kids with disabilities a year ago, and i now have 15 members. All of our children are around Neeves age though, so we dont really know what to expect in the future?
The specialists have told me that when she hits puberty that there is a possibility of her developing severe mental problems if she is unable to deal with the changes occuring in her body. This really freaks me out!!!! She also has sensory dyspraxia and mild ADHD and can be a handfull, though sometimes i find her wee sister harder to deal with because she is unpredictable - with Neeve, im always one step ahead of her! Have you took the adult test on the NAS website? I did and it came back borderline! I have developed OCD in the past few years, which docs said was probably because of my routine with the girls, but in all honesty, ive always liked things a certain way! Sorry if im rambling, i tend to do that when i start talking to anyone in the same position!! Look forward to hearing from you. Kerry x

Hiya Kerry.

I have a son with fragile X syndrome, I don’t know if you have heard of it or not? He has what the experts call “autistic features”, ie if he’s excited about something he’s watching on the telly, he flaps his hands.  There are many many other things he does and many thing she cannot do. I started a thread about it some time ago:  http://www.femaleforum.com/forums/viewthread/850/

I understand totally your concerns for the future. This is something that bothers me too because obviously one day I won’t be able to look after him any more.

And we don’t mind you rambling in the slightest. I’m sure life must get very stressful for you at times. We are all here for you with any advice we can give, so ramble away.

Sorry I may have given you the wrong impression Kez - it is my siblings, neices and nephews diagnosed with Aspergers and a neice and nephew with Autism. I have one son who would most likely be diagnosed as having Aspergers but he’s never had the actual diagnosis. We all have traits of Aspergers though.

Life gets better as you mature even for someone with Aspergers. You learn along the way what is expected social behaviour and what isn’t. I’m still literal. I still hate socializing ‘in person’ with people who I don’t know. It’s much harder when you don’t know people to know whether they are being literal or not. With people you know you’ve learned their signals for non-literal things or feel comfortable enough to ask because they don’t think you’re just being weird. It’s good having someone with you who understands because they can interpret for you.

I actually ‘get on’ better with people with Aspergers and communicate with them much easier because of the ‘simple’ way they communicate. They say what they mean and mean what they say. It makes life so much easier LOL.

With your daughter regarding puberty Kez I can’t see any problems if you keep her informed as to why it happens, what to expect and let her know its all a natural part of growing up. Make sure she knows there’s nothing wrong with her. People with Aspergers are best when they are well informed. Start by telling her about ‘growing up’ a few years before its all going to start happening. Watch for literal interpretation though - if you say teenagers get cranky and irritable when they start going through puberty she will expect to be cranky etc and won’t understand why, if she’s not.

The best thing you can do for someone with Aspergers is give them steps and directions and FOREWARNING. I guess you know this though seeing as she is 8.

My eldest son is 27 and has a high IQ but he has ADHD, he has only 40% vision in one eye , dyslexia and various food allergies and a form of parkinsons.. its non progressive but incurable the tremors being worse if someone stares or if he becomes stressed.
Dispite this and dispite professionals telling us he would never manage to hold down a job or even function properly in society, he has worked hard and now has a very good job in a company who provide customer service call centers, he is an international team leader speaking 3 languages and keeping a whole team on target.

As for my younger son 25 ..I never thought he had a problem , he and I got along fine but then other people started to mention that he never made eye contact and rarely spoke to other people he was about 2 at this time.
I put it down to shyness, he went to nursery and infant school and showed no real problems but as he grew up we realised that he avoids eye contact and unnessasery conversation ..chit chat is not for him. Some of his friends were a bit ..well off beat.. I suppose you’d call them disfunctional. They expected nothing and nor did he.
he trained as a car mechanic and in a very personal (for him) conversation admitted to me that he preferred mechanics because there are rules ie; A + B = C every time no emotion no if’s or but’s. Its only this year that he has dared go to the doctor or dentist without me I never had to go in but I make the appointment and sit with him in the waiting room because he feels unable to deal with ‘people’..
He is doing ok has his own home and dog! He works full time although through ill health (fybromyalgia) he can no longer be a car mechanic so he makes and tests micro switches for automatic systems on trains.
My doctor says he proberbly has a mild form of autisim, I dont know and Im not going to ask him to get tested.

Just as with my eldest son he has worked hard made a sucess of his life and I think he should just enjoy it.

Hi, I have a son who has been diagnosed with Aspergers, and he is 34. diagnosed 3 years ago. He slipped through the systems, people said he was just a little slow and backward. He is coping as best he can buthe has other conditions I am sure of it now. He cannot work, he is 100% anxious and stressed the whole time. He worries about people walking past his window, he worries about journeys to and from me and I only live a mile away. He shops ok for himself. He doesn’t have heating on in his flat all through the winter, he is a gentle person, but I am finding it difficult to cope with him now. Partly I blame myself for not seeking some kind of help for him when he was younger, but Aspergers or Autism was never in the family so I didn’t have a clue. My grandson of 3 is autistic, so this is how it has all come about. I don’t know how I can help him, he is getting worse with his odd ways and behaviour. He is seeing a specialist but I have found they are not help, apart from suggesting a course for my son, which he has been on, plenty of them.
Sorry, just wanted to put my case across to you all. If you suspect your child has aspergers or anything at all, please do seek help if you can. Help is out there somewhere but I havent found any for my son. Family Mosaic havent helped, or residential housing.
Take care of your loved ones. Valerie

First of all, stop blaming yourself.  When your son was a child, there just was not the widespread knowledge of conditions such as his.  It is not an easy thing to live with, either for those with the condition or the family members who watch and help as they can, but cannot wave the magic wand and make everything all OK again.  My family have a few health conditions shared around, not aspergers, but I don’t imagine for a minute that you have an easy time.  Remember we’re all here to support you even if we can’t come up with magic solutions.  We’ll do our best to understand you.  You say your grandson has autism, at least, even with such a diagnosis, when the dust settles, schools and the health service and are expected to be more supportive.  How are your grandson’s parents dealing with this?  Are you revisiting your own son’s childhood as a result?  Sorry if I’m asking so many personal questions, ignore the ones you don’t like!  But do keep posting whenever you need a little boost.

Its so good to know that there are other families out there who know what aspergers, autism and adhd are like to live with. And i have heard of fragile x but dont know a lot about it! I havent posted for a while because my daughter started a 3 week trial of melatonin last month, and i have been constantly checking on her when she is sleeping! She used to go to sleep at around midnight, but since the melatonin she has been asleep at 8.30pm every night - its great!! She is more hyper through the day, but as we are all now getting a good nights sleep she is easier to deal with through the day. Though i must admit there has been a couple of nights i have found myself giving her the melatonin half an hour early just to calm her down a bit! Hope everyone is well? Kez xxx

Kez we all cope better when we have had a good nights sleep, so I’m glad to hear the melatonin is working for you.It certainly does make life easier to deal with in the day.

I used to have to give my son valagin at night because he simply wouldn’t go to sleep and he used to wake up so early, I was like a zombie a lot of the time. Thankfully now he sleeps like a baby. It’s me who wakes up early now.

How is life treating you then young Kez? Good to see you again. Don’t be a stanger eh? Have a go at our quizzes, they are good fun. I’m useless at geography though, totally useless.

Hi, life is pretty good at the moment!! I am getting married next year, so am busy trying to bag myself some bargains on ebay! Have done very well so far! I must admit that my daughter is a lot easier to deal with now that i am getting a proper amount of sleep, though i keep sleeping in and getting the girls to school on time is a nightmare!!! It seems like i am trying to catch up on years of missed sleep all at the one time, but hopefully i will get used to the extra sleep, just as my daughters are!!xxx

Yes sleep deprivation is a horrible thing… it is amazing how we learn to cope and just do without sleep but when you finally start getting it the whole world seems like a very different place. Good to hear you’re all much more rested kez!

leekat - 02 Oct 2009 07:09 AM

Hi, I have a son who has been diagnosed with Aspergers, and he is 34. diagnosed 3 years ago. He slipped through the systems, people said he was just a little slow and backward. He is coping as best he can buthe has other conditions I am sure of it now. He cannot work, he is 100% anxious and stressed the whole time. He worries about people walking past his window, he worries about journeys to and from me and I only live a mile away. He shops ok for himself. He doesn’t have heating on in his flat all through the winter, he is a gentle person, but I am finding it difficult to cope with him now. Partly I blame myself for not seeking some kind of help for him when he was younger, but Aspergers or Autism was never in the family so I didn’t have a clue. My grandson of 3 is autistic, so this is how it has all come about. I don’t know how I can help him, he is getting worse with his odd ways and behaviour. He is seeing a specialist but I have found they are not help, apart from suggesting a course for my son, which he has been on, plenty of them.
Sorry, just wanted to put my case across to you all. If you suspect your child has aspergers or anything at all, please do seek help if you can. Help is out there somewhere but I havent found any for my son. Family Mosaic havent helped, or residential housing.
Take care of your loved ones. Valerie

Hiya leekat,

It is very difficult for those who have slipped through the system. My brother is one of them and has spent most of his life trying to cope in a world that he doesn’t fit into. The relief he had just from finally being diagnosed was enormous simply in just knowing there was a reason for the way he was. He copes ok but like your son gets very stressed, doesn’t cope at all with new situations or change, loaths social activities and would happily spend his life locked inside if he could. Family gatherings are ok once he’s there and settled but the actual getting there is very difficult for him - not unlike how I myself used to be but I cope much better with it now.

I agree, if you are suspect something isn’t quite right, seek help. It can mean the difference between intervention at a very young age which means strategies are taught earlier and being an adult who is hanging in there by the skin of their teeth.