Daughter about to get diagnosis of aspergers, im devastated...is this normal?

[kelzyboo]

Thanks velvetina, think your right about fear, i still haven't told any of my friends to be honest most of my family don't even know and although the diagnosis was recent, we've known about it for over a year now. I've talked, but only to my mum really she's been fantastic and she's very close to my little girl but i still panic at the thaught of anyone outside the family knowing. I don't know why really because i'm not and never will be ashamed of my beautiful daughter, i think my fear is for selfish reasons if i am totally honest with myself, i don't want people to think i am a bad mother, that i did something wrong somehow! I know as well as everyone else that that is not true, it isn't anything to do with me or anyone else its just the way it is but i am still scared deep down that i will be judged. it sounds awful i know. I also don't want people to look at her differently, she is still the same child she ever was and she's wonderful, she charms everyone she meets, i just worry that people will think differently of her if they knew of her AS.

Unless you know what to look for it's not completely obvious when you meet her, she's just highly intellegent and doesnt listen to a word anyone says, she's very much in her own little world and never makes eye contact but she just seems like any other strong willed defiant little girl. I don't know who to tell or even if i should? I want to get to the point where i can mention it in conversations and not get upset or feel we are being judged, i don't want anyone feeling sorry for us theres nothing to feel sorry for, i am the proud mother of an amazing little girl with AS there are plenty worse off than i am!

It seems silly that i can't just tell people, think i am only just coming to terms with it myself and hopefully very soon i won't care what anyone thinks because i know that even though it makes life harder, it makes it so worth it aswell.

Thanks for replying, im glad your son has a friend with AS, my little girl is friends with a little boy a year older than her with AS and i see what you mean when you say it "fits", its like they have an understanding of each other on a level that we cant see, they get each other totally and its amazing if they can have that xx

 

[velvetina]

Your welcome hun,

I totally understand how you feel about the "telling people" bit. My friends and family had already spotted something was "off" with ds. My brother who doesn't have children commented that he found it hard to engage with him and mentioned it to my mum. I used to spend hours talking to my mum and dad over texts and books I had read (we are talking pre internet here) and they would listen. I didn't even really talk too much to dh, mainly because he was always working. In the end my mum was about to book a private app for me to see a dr because they were so worried about me, when I made an app for ds myself and it went from there.

My friend asked me over to talk to me and it transpired she was as terrified to raise it with me as I was to talk about it. She didn't want to hurt my feelings but was worried. I found once ds started intervention, I would mention what we were doing and why and that explained a lot.

Once you have done it once hun, it will come again and replace that horrible feeling you get when you are trying to cover for something they are doing or not doing and the reality is we are not fooling anyone, just totally stressing ourselves out.

Try it once hun, no one will judge you are not a bad mum, its not anything you did, it just happens.

Good luck x

 

[kelly1979]

Hi, my daughter was diagnosed in october (she is 9) and we too have known since birth she was different. Jessie is high functioning with sensory needs, she self harms too by scratching her skin and making herself bleed but because her pain receptors are low she cant feel it. its taken about 4 years for a diagnosis as I am a learning mentor and have worked with SEN children for many years and because i have used coping stratagies with jessie that i use at work jessie seemed to be "not that bad". Jessie is finding school really hard at the moment, not the work, the sitting still part and her teacher is very old fashioned and thinks jessie is just a naughty child. I could go on and on but i understand how frustrating it can be. feel free to chat with me if you wish x

 

[Newt]

great thred, I have especially enjoyed reading nics posts, a real insight to living with aspergers, thank you.
We are still waiting for an autism diagnosis for oscar. It was picked up by our health visitor, we had no idea, we just thought he was behind with his speach. So it was as much a shock to us too. We went through all the emotions you explained, why hadnt I picked up on it? I'm his mother, i didnt knotice? Maybe if I had talked more when he was little, played more, not let him steal the smoked salmon off my plate, not given him the mmr jab and the flu jab......all goes through your mind, fact is, there is nothing I could have or should have done, he is who he is.
I remember sitting on his bed, watching him asleep and distraught, in tears, cos I was so worried about what the future will hold for him.
That was a year ago and I feel a lot more optimistic now, he has great support, and is coming along lovely. he is still 'querky' but that just makes him more adorable. My fears of him not being able to show us any love was unfounded, he is the most loving and cuddly little boy, all on his terms though. lol. fair enough
It is a shock hun, please dont feel guilty for not picking it up youself, we didnt either Only now as we learn more about autism do we see that yes there were traits, even when he was a baby.

 

[Sevenladybugs]

I'd just like to add my perspective. I'm married to a man with high functioning autism and we have two sons on the spectrum. They are all very high functioning. When I figured out what was going on my sons were 8 and 5 and I was extremely distraught for quite awhile. We had some other life stressors going on at that time that made it harder for me but we worked through it all and now they are 16 and 13 and doing fabulously. People on the spectrum with the right supports are able to do anything that typical children/adults can if they are given enough time and patience. It took me a long time to get to the place I'm in now, but even if this new baby is on the spectrum I'll be fine. I know the outcome can be amazing! My older son is completely mainstreamed in H.S. and getting A's and B's without even using any of the accomodations he's entitled to under his IEP (Individual Education Plan). My husband has a good job and over the years he's grown so much as a husband and father. We've been married for 20 yrs and I can tell you that the growth is lifelong. Don't EVER let anyone tell you what your child can or cannot do, or what their future looks like. I am only sorry that i let people convince me early on that my kids were doomed to need help forever and live at home and not have an independent life. They know nothing and tend to label and put kids in boxes. Keep your heart and mind open and these kids will amaze you

Oh and the idea that they don't love or form real attachments to people? Phooey! It's completely wrong. If anything these children are more emotionally sensitive. They might not pick up on emotional expressions of people visually, but if you tell them they have hurt you when they really get it and understand they are just as empathetic and often more upset about hurting you than a typical child

 

[kelzyboo]

Newt: i wasn't the first to notice with my daughter, i felt so guilty for that and questioned what i did wrong, i think its a natural response. I didn't give my daughter the MMR because of the fuss about it causing Autism at the time, didn't reckon on her having it anyway but it cannot have been anything to do with that as she didn't have it. Shocking i exposed her to the dangers of measles,mumps and reubella all to avoid something she was born with anyway!

Thankyou Ladybugs: I get what you mean, my Abbie amazes me every day and i don'tthink theres anything she couldn't do, she is behind socially not anywhere else! I agree, no one has a clue what these kids can do and they can and do learn social skills as they grow up so i won't listen to anyones negativity because it doesn't have to be a negative quality, certainly isn't for my daughter and it doesn't sound like it is for your husband and son's either!!

I am proud of her, autism is a small part of her personality but it doesn't define people, hey i'm not the most social person and i'm not autistic, we are all different, i love her differences and will always celebrate them and teach her to do the same.

Who wants to be the same as everyone else anyway lol xxx

 

[Andypanda6570]

I suspect that my nephew may have this. He is 14 now , but I probably have known it since he was 4. They have never brought up the subject with anyone so I figured it was not my place to bring it up either They constantly yell at him and even smack him and It breaks my heart and I want to scream at them, but I don't. I think they know exactly what he has , but they are in denial. My nephew loves me cause I always make him laugh and when he is fighting with his mom I try to calm the situation. My sister in law goes right to smacking him, instead of trying to talk and then she gets her husband all fired up and he is also screaming at the kid. I need to walk away , cause if I stay I will explode on them. I am not saying they abuse him, but they do hit him when he says something disrespectful. He is in high-school and already has had some problems and even got into a fight. He will laugh at certain situations , but that is just how he is, I know the other kids know he is different, kids just know. He is so smart and so funny and I just feel he is not getting all the best out of life he should be. His parents have plenty of money and soon will inherit millions , so it's not money, I think it is just denial. I am sorry for taking over your thread I just needed to tell someone.
Thank You

 

[kelzyboo]

Awww that sounds awful, have you ever tried bringing up the subject? I can't imagine its an easy thing to ask but maybe they do not think there's a problem, unfortunately without proper diagnosis these kids can be seen as just 'naughty and inappropriate' which they are absolutely not but maybe they don't realise that there could be a reason for his behaviours?

I think all parents go through a stage of denial, i know i did, but i had to snap out of it because denial doesn't get our kids the support they need. My daughter was terrible, biting and hurting kids at school (and me) every day, now she has support at school and we understand better how to deal with it, she isn't as violent, it does make a difference!

I will admit i have smacked her once or twice, out of complete frustration and reaching the end of my rope, i am not proud of that in fact i hate myself for it, they probably do too. It can be so hard to deal with the behaviours, especially when you don't understant the reasons behind them, i think i would try talking to them, maybe you have a 'friend' or 'co-worker' who's child has Autism (you don't really have to!) maybe chat about that, mention the symptoms and see what reaction you get?

It may be that they never accept it and seek help for their son and as hard as it is, thats their choice, all you can do is continue to be there for your nephew as you have been, be his calming influence and he will turn to you when he's ready to find out for himself why he's different (he will be well aware that he is). You seem to be very understanding and he will need that, i'm glad he has someone who understands him and can help him.

I hope it all works out well for him, rest assured they are some of the most interesting, loving and understanding people you could find and with support and understanding are really no different to anyone else, take care xx

 

[melshaw]

I personally don't have a child with Asperger's, however, I am blessed to teach and interact with about a dozen everyday. I work just with our Asperger children through our special education department. Most of these students are tenderhearted and loving. They amaze me daily with the amount of knowledge and love they have for a particular subject. There are days where there will be an occasional "meltdown", but we do the best we can to make sure the students transitions from class to class are a routine as possible. All of our Asperger students are mainstreamed and attend regular classes. Many of the student do not need the accommodations that they have on their IEP. Yes, unlike some people say, they do have friends. Granted they don't go around making new ones everyday, but the ones they have they hold dear. I know this is going to be a long and eventful journey. Since Asperger's is more commonly diagnosed these days, and recognized in the educational system, there might be a support group near by.

 

[kelzyboo]

I agree they do have friends, Abbie ignores most children in her class but they all seem to love her and still make an effort despite this, there is one little boy who wants to give her a hug and a kiss before she leaves every day (not sure i'm happy with her kissing boys lol). The point is although she has her meltdowns (had a very big one with me this morning, we were very late for school!) she is still very well liked within the class, both children and teachers, it doesn't always follow that because they are different they will be left out, its deffinately not the case for her and if she is left out it's of her choosing, which makes me happy as i don't want her feeling she isn't included.

There are only one or two people in her class that she actually pays attention to and mention's at home but thats better than none, she does actually play with these kids at school aswell so thats great! They can and do have friends, i agree with that it's just harder for them to make them but its not impossible!!

Sounds like you have a really great job mel, i'm glad you enjoy it because you make a world of difference to these children! Abbie's 1-1 teaching assistant has had a brilliant effect on her, she still has her meltdowns, probably always will, but the difference in her is immense since her 1-1 started! Keep up the good work and always know, even when it's been a bad day, the difference you make because you do xx

 

[Sparkleyone]

Hi there,

Your little girl sounds absolutely amazing, and you are such a credit to her I'm sure. I love the way you speak about her. It really is beautiful.
My little boy has classic Autism, its something I am still struggling to come to terms with, even though he is blissfully unaware, its me who is hurting big time. I just wanted to let you know that some of the things you've written here have somewhat helped me, I think I need to look at my sons condition from a different perspective.
Xx

 

[kelzyboo]

Thankyou, i'm glad i could help. I think it's always us, the parents that hurt more because we have dreams and hopes for our children before they even arrive, they have no idea! For me, i prefer to look at it in terms of what she can do rather than what she struggles with, everyone struggles with something whether disabled or not we all have different things to deal with and thats the way i see it. We just have to change some of our dreams and goals for them and think more about the here and now, not what will happen in 10 years time.

I think the worry of how they will deal with their difficulties is sometimes much worse than the reality of it, they adapt way better than we ever could don't they! I just think that all we can do is love our babies and teach them how to help themselves, aswell as teaching them that different isn't always a bad thing.

They say that children with Autism don't have a sense of humour, thats not true Abbie has a cracking sense of humour she makes me laugh constantly, never a dull moment. They can also be very loving and affectionate, not all the time and mostly its only when they want to but it does happen and when it does its so special. They may not be like every other kid but hey, neither was Einstein!

We all have our own ways of looking at it but the one thing that's the same is we all love our children and do our best for them whatever the situation x

 

[lynne192]

thoughts with you hun, i have aspergers syndrome and high functioning, i went to school and although they thought something might be wrong it took till i was 19 for them to dignose me, it seems my son might have it too and i have been worried about it so that in itself is completely normal.

i am here if you have any questions. there are many books out there that can help and with a dignosis you can get much more help than you would without it.

i managed highschool, i have a great partner who i am planning to marry soon, i have a great son, been studying for a few years, worked, and such like normal people the only thing that is noticeable about me i am easily distracted lol, i love computers and anything to do with them, and i am not a people person. oh and my co-ordinational skills are pretty bad at times. anyways i am sorry to read and run but got to go get my shopping i hope your get help and support your need

hugs xxx

 

[snay2011]

reading these posts makes me feel so much better, just knowing that i am not alone in my situation is a huge help

 

[Midnight_Fairy]

Hope you are ok x

 

[kelzyboo]

Your deffinately not alone snay, lots of lovely supportive people in here whenever you need a chat xx

 

[morri]

High hun! I have high-functioning ASD, and I wasn't even diagnosed until I was in my early 20's so I missed out on the support systems (that probably weren't too common when I was growing up anyway). Despite that, I've had a pretty normal life and now I'm a wife and mother so I wouldn't worry too much about your LO's future. Some things are harder for me- I can't drive, for example- and a lot of people don't understand how much certain things (noises, etc.) can affect me so it gets frustrating. Good luck! People on the spectrum are some of the most interesting, intelligent and funny people I've ever met.

I am in a kind of fringe zone if you understand what I mean . I was assessed for 4 weeks on a psychiatric ward when I was 18 and the report stated that I am probably on the high functioning scale of ASD but it was never investigated further because I was always comfortable with myself(as in I saw nothing wrong in being a loner with quirky antics as my mother would describe it. ) I may have never fitted well with other people my age but nevertheless I have been in a happy relationship for 3 years. There are places and sounds I don't like but I try to avoid them.
(When I was 5 I saw once a child psychiatrist but she said if she has it than you can't change it anyway but she should continue to give a stable and secure upbringing well (1990))
There are many inspiring people who have ASD too, so it is not all doom and gloom basically it is as much variety as in NT's (neurotypicals) as well . (Look at temple Grandin who is a woman born in the 50s who has ASD next to her field of work she is also an expert on ASD.)