New to the ASD world and feeling lost

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Hi everyone,
Im a mother to two beautiful children and my eldest is my daughter and she's almost 5.
We began seeking professional help for symptoms of anxiety early this year and it has led to a preliminary diagnosis of Aspergers and Anxiety.
I could have been given a formal diagnosis by now but wanted to go away and do a little more research as some of it just didnt seem to "fit" whilst other characteristics were spot on to what I had read/been told.
As it stands right now, Im 90% confident in the diagnosis and the last 10% is....I dont know....Denial?
Basically, Im struggling to actually make that final decision to say to the paediatrician "yes lets go ahead with the formal diagnosis". Our paed has already said that based on our psych evaluations and everything she is happy to go ahead with it but she wanted me to go away and do more research to get my head around it all as I had lots of hesitations and questions.
My daughter has been a challenging child since the day she was born and instead of getting easier the older she gets it just gets more difficult. And now that she is due to start school in a few months time Im becoming more eager to have this so-called "label" (or not) one way or another so that if she requires additional help, she can get it.
I don't really know where to go from here. I don't any experience with Asperger's and I don't have any friends with experience so I feel like Im a bit lost.
Hoping that this might be the place to come to get some advice, reassurance, or to compare notes so to speak.
Thanks for listening

Hi M2AZ and welcome to WP.

I have a 6yr old daughter with Aspergers. I joined this website around the time that I realised she might have an ASD. Like your daughter, she has been difficult since the day she was born, but I had no idea what the cause was. I never even discussed any issues with my doc or health visitor, especially as she was meeting all of the milestones (in fact she was way ahead on some of them). It was only when she went to school, at 4 1/2, that everything started to click. So, I spoke with the school, she was referred for assessment and, just over 18 months later, she got a diagnosis.

As for you saying that your daughter doesn't quite 'fit' the diagnosis, I thought the same about my daughter. I thought she'd get a diagnosis of high functioning autism, as she didn't seem to meet the specific criteria for Aspergers. But, it was clear to those doing the assessment that she did indeed meet the criteria. I just didn't realise certain things about her (or we had grown to accept things as 'normal', which were actually classic signs of Aspergers). Please bear in mind that girls tend to present slightly differently from boys anyway and the studies are populated by boys.

Anyway, I hope you find a lot of info on here. It's a great resource for parents like us.

BTW Your daughter shouldn't need an actual diagnosis to get help, if she needs it.

Last edited by Mummy_of_Peanut on 26 Oct 2012, 6:23 am, edited 1 time in total.

Denial is very common, but you really need to overcome that. When I was first told about AS and I read about it, I also thought my daughter did not fit. It is because AS is a syndrome, not a disease. Not everybody will show the same characteristics. My daughter was diagnosed wit AS at 8, and she did not have earing sensibility anymore by then, she did hand flapping for a very short time, she does not have many fixations or special interests and move quite quickly from one to the other, doesnt have meltdowns... But she has AS! Every case is different, and it is different in boys and in girls.
My advise is: embrace the dx and start seeking a good therapist for your daughter. When she starts school she is going to need it. School is the source of so much anxiety for our kids! A therapist can also help her handle anxiety through exercises and techniques.

Hi there, I have a daughter who has just turned 5, she started reception class this year. She has always been very dificult and it got to the point where I knew something was different about her and I just couldn't cope with the behaviour. I went to the GP and it just snowballed from there and we are now at the point of a diagnosis of Aspergers. We decided to send her to a private school as the style of teaching there would suit her better and there is more one to one with the teachers due to smaller classes and no curriculum to follow. She is absolutely thriving there, she is more considerate to her younger sister (aged 1) shes nicer to me as 6 months ago she was basically bullying me, physically and verbaly picking on me constantly. Shes better behaved, more polite. She has a strict routine at school and its really working for her. I used to dread the school holidays (she had one year part time at a nursery school, so school wasn't new to her) but this half term she was a delight to be with. I dont think I would have ever said that before!

So if you are happy to wait you could give it a while to see how she settles in at school. Then pick up where you left off if nothing changes. I was told school may sort her out but I never for a second believed it because she had already had a year in preschool and had spent time with childminders before that. I am not saying she doesn't have AS anymore but this particular school has really helped. Im still going ahead with the diagnosis as there are so many other signs that concern me, we just have less behavioural problems these days.

She still grinds her teeth and seems visibly anxious at times, covers her ears when the baby cries, obsesses over her special interest, seems to have selective hearing, trouble concentrating and face blindness. She stims alot and her mind seems to work in a different way to mine generally, so I think the signs are still there but the main problems have been reduced to a level I can deal with!

I think aswell kids behaviour changes at 5, my nephew was difficult but since he turned 5 hes really grown up and can be reasoned with, hes NT. Hes doing well at school too.

Sounds like you are doing the right thing by not rushing in Hope this helps you to make your mind up! Feel free to pm me if you want to chat.

Thank you all for your replies. I really do appreciate it!
It sounds as though we all have very similar stories.
I sought help for my daughter because she becomes overwhelmed by people "watching" her, she doesnt like to be judged/put under pressure. She picks her nails and lips etc as a nervous habit and she has always had terrible separation anxiety to the point where I still have to lie with her while she falls asleep, and she still comes into our bed most nights and she will be 5 in December. I wanted to get the anxiety under control before she started school (she's been in day care since age 3 and always had trouble with separating there) and AS had never even occurred to me until the psychologist told me that she seemed to have many characteristics.
She is obsessed with birds, knows all about them, likes to talk about them, colour in pictures of them, pretend to be them, to the point where we went and bought her one because she was just soooooo intensely focused on them that we thought she would benefit from having one.
She has fantastic language skills and has always been incredibly advanced academically (even though shes still very young) but she seems to really struggle socially/emotionally.
She becomes very repetitive with both routines throughout the day and also in play. She likes to play the same game over and over etc.
She has always been incredibly emotional but it seems the older she gets, the more intense the emotions are. When she hurts herself you would think she had broken a bone the way she cries, yet it might be a tiny little scratch. If she is tired, over stimulated etc she will have a MASSIVE melt down and wont be able to control her crying. She seems to be angry a lot - she clenches her teeth and talks to me with what feels like hatred. And she is very, very rough with her little brother. She often yells in his face or I've caught her pinning him down in anger and he is only 15 months old so it breaks my heart to think that she is acting this way toward him when I know she loves him very much.
Having said all that, some days we have a FANTASTIC day and she is perfectly well behaved, easy to deal with, polite and calm. When its good, its good. But when its bad it is BAD!
I've always thought perhaps I just don't cope well as a mother but it would seem perhaps my daughter is much more challenging than the average child. Maybe Im not such an inadequate parent after all and just in need of some specialised parenting tools!
We have enrolled her in a private school that is quite small and that has a full time teachers aide in the classroom which appealed to me.
I don't so much feel like IM in denial of the possibility, but feeling very unsupported by my family and friends. My mother and brother etc have all made comments saying "lots of kids struggle with friendships at this age" or "all kids have tantrums and special interests at different stages" and things of that nature to try to convince me that it's not the case. There seems to be this negative under tone to our conversations about "labelling" my daughter and her ending up with this label for life and it affecting her negatively. Which leaves me on the one hand feeling like I need to not listen to them and listen to the professionals, but on the other hand I feel like my family knows her better than the psychologist and the last thing I want to do is make her life more difficult.
Sorry if it doesn't make sense or I sound like im rambling - it's all very confusing.

I think the natural tendency of people is to reassure you nothing is "wrong." To most people different=wrong (not trying to start a flame war on this; I am just saying that is how most people in the NT world look at this.) So some of them don't mean any ill, they think they are helping. My mom is like this. We have a diagnosis; My son is clearly autistic, but she thinks it will make me feel better to pooh pooh it when I explain why my son does things a different way. Honestly, a lot of it is people are trying to shield themselves, emotionally, too. Again, because they view different as wrong (because that is how it is viewed and depicted OUT THERE (Please do not flame me---I do not agree with this; I am explaining how a lot of other people think.)

About the labeling: Here is my thought on this. If your child needs help to be happy and to deal with her daily life, and her future then she needs the help. "Passing" does not prepare you for life unless you can simultaneously acquire the skills you need at the same time. If you can do this you do not need a label. if you can't, then you do. We are in the "label" camp because my son needs the assistance, and needs to be handled in a way that takes his label into account, so as not to make his life unbearable. He would be punished for things he legitimately cannot help, otherwise, because emotionally he is half his chronological age despite being super smart and above grade level in certain things.

Based on what you said, so far, IMO I would concentrate on getting her to handle her emotions. I am in this boat with my son, too. The first thing to do is to figure out how aware she is about emotions. Can she define the basic ones correctly like anger, fear, happiness and sadness? Can she apply them to herself (describe how she is feeling, accurately and predict how something might make her feel if it happened to her.) If she can (we are not quite there, yet, and my son is 7) she can learn to handle them better. If you can get her to identify emotions early enough, while they are happening you can get her to learn and apply self-calming techniques. In addition, if she can identify emotions in others that will help her in social situations and in dealing with teachers etc.

Haha we have pet land snails! My daughter loves snails so much, although I think I would prefer birds!

Some similarities with my daughter:

Good language skills from very early age - talks like an adult, never mumbled
Struggles emotionally and socially - very upset over little things, inconsolable at times
Anxiety - grinds teeth, bites arm, hits head, gets angry
Repetative movements (stimming), words, songs, games, likes organising things and making 'repeating patterns' as she calls them - Waves her arms, rolls eyes and sighs a lot, makes odd repetative noises
Sensory issues - she over reacts to the slightest touch yet she broke her leg at 22 months and we didnt even know as she just carried on with a slight limp as though it was just a sprain
Very emotional - She picked up a bit of string off the floor but lost it out the window of the car 5 minutes later, still upset about it months later despite finding a new similar bit of string! Apparently it looked like unicorn hair!!
No volume control - yells in our faces and shouts in babys ear, literally cannot be quiet, doesnt seem to know how

I really felt bullied and hated by her for the last year or so, she was nice to everyone else and no one else saw her the way I did.

Totaly agree with the 'when its good its good, when its bad it bad thing', everything with her is contradictive and extreme. So when other parents say their kids are the same, yes they may do similar daft things but are they obsessive and aggressive about it to the same extent? I too blamed myself, I had post natal depression with her and its come back now with my second but I actually think its more to with the AS daughters behaviour and not post natal at all. I got myself down to the Drs and got anti-depresants so I could see the situation clearer. Now Im sorted emotionally I can see its not down to me. Also other people can now see how she is and I no longer feel alone.

Unsupportive family is practically a symptom itself!! I was totally alone in my thoughts, had to persuade my husband and all of his family. My family saw it themselves and did not need convincing at all. I asked myself why only half my family believed me.... the other half all have undiagnosed AS or some traits of it themselves, therefore this is normal to them, all their kids were the same! My husband now agrees with me and has done an online test and now knows he has AS too. I too am being accused of labeling her, inlaws think I dont love her and am pushing her away. Its quite the opposite, I love her so much I want to help her, if she had a worrying lump I would not hesitate to get a Dr to check it out so I knew what it was, why is this any different. I see her suffering with anxiety and being laughed at by NT kids and shes unaware of their ridicule, I dont want her to get bullied at school!

Your posts make perfect sense and you will find a lot of the Mums on here have had or are going through very similar problems. Stick with us and you will feel better!!

Your daughter sounds a lot like my little one!

Mine will even will even tell you what they are thinking about her. Like she can read minds. She uses her iPod or a book to avoid visual contact while at the school bus or when she needs to wait for the bus.



My daughter used to pick her nails. She does not do that anymore (thank God). She is 12 years-old and I still need to say with her until she falls sleep (mostly because she is terrified of night), and she always comes to our bedroom if she wakes up at night, mostly because when she wakes up is because she had a nightmare or because she cannot sleep.



My daughter is obsessed with science in general, specifically rocks and animals. We had bought her a lot of books and encyclopedias about science and rocks. She also loves to behave like a cat. She even liked to drink her milk in a bowl, licking it, just like a cat.



GA would watch the same movie or the same scene over, and over, and over again. Now that she is bigger she still does it, but not so many times.



I thank God for band aids. When my little one had a scratch the only thing that would stop her crying (yes, like she broke a bone) was a band aid. I always thought it was more like seeing the blood. Last time she had her teeth clean she ended up so stressed she was very quiet, with her eyes red, and trembling. I had to hold her, comfort her, and stay with her for the rest of the evening until she was able to talk again and be herself again. It was heartbreaking.



My daughter used to get red faced, made fists and stood up very straight, trembling from the anger. Over the years, with the help of the therapist, she has learned to control her emotions. She does not get angry as easily now.



It gets better with time and with the proper help. My daughter has being receiving therapy twice a week for the last 4 years. Now we only have bad days about once a month. The rest of the days are good or not that good, but not that bad.



Yes, our kids are more challenging than the average child. I have had NT childs to my care, and they are piece of cake. I can even handle a room full of kids without problem. But my daughter... she is a completely different story. And yes, you will need help. I do not think I would have being able to achieve what we have these years without the help of my daughter's therapist. They just know their job, and my daughter's therapist is great at it. But I think challenging is a great thing. They help you become a better person. That is my experience, at least.



That was very smart. Kids with AS need small groups. The smallest, the better. Teachers aide is also appreciated. The only thing is: try not to rely that much on the teachers aide. My daughter became dependent and she knew how to manipulate the teacher to have her do my daughter's job.



My family and friends are also in denial. You just talk to them and they do not listen. Is like you are inventing all that stuff up to excuse your child's behavior. Not even the dx can convince them. I just stopped trying. I made on-line friends to talk about those subjects, and my husband and I take care of our child ourselves.

Ilka - I swear my daughter can read minds too lol! She can be so in tune with others sometimes, yet blind to emotions and expressions. A lot of the things I see in her contradict eachother. Its very confusing! For a while before we twigged it was AS a lot of odd things crossed our minds, it was like she had a split personality, almost posessed, one minute she was fine the next she was on the floor screaming for no reason and hitting herself in the head and writhing around like something out of a horror film!

She also loves to pretend to be a cat or a dog, and she will really stay in character for hours, eating off the floor, not speaking just meowing or barking, she takes on personas too and tells us off if we call her by her real name not who she is supposed to be.

Thank you so much for your replies - it is such a relief to have found others who understand what Im going through!
Just quickly, what does NT stand for? Sorry im still learning the abbreviations

My daughter also gets the repetition with tv shows - she has been obsessed with Charlie & Lola for nearly a year now and we have at least 20 episodes of it and she has watched them all numerous times each. She never gets bored of it!! !

ConfusedNewb all those things you described about your child I can relate too. My daughter speaks like an adult too! she's always had very clear words and has been speaking in full sentences since before she was 2. She sounds so much older than all her peers and it makes it hard for myself and others to remember that she is infact, only 4.

I completely agree with you about trying to get her to handle her emotions ASDMommy. We've talked a lot about feelings and she does recognise emotions and can sometimes apply them but other times if i ask her why she feels angry she says she doesnt know or if she feels sad she just says she misses her dad (he works away which in itself creates a lot of problems because of the inconsistency in his presence!)
I bought her a gooey stress ball type thing so that when she feels angry she can squeeze it or tear it apart or whatever and shes used it a couple of times but i cant say whether its been useful or not yet as shes only had it a couple of days and isnt overly interested in it.

ConfusedNewb I too had post natal depression after my daughter was born and it took me until she was 2 to start to feel normal again. I have been lucky enough to cope well with my son and not have got it again but I have read that a lot of AS kids are not good sleepers from a young age and i think my sleep deprivation was a big factor in my depression because she just would not sleep! even at 18 months she was waking up to 10 times a night.

And i COMPLETELY agree about other parents saying their kids are the same - it creates so much doubt in my mind because i think "well if they are all like this, why am i having such a hard time handling it?!" Yes all kids have trouble with emotions and expressing themselves and yes they can all have big melt downs etc but the intensity with my daughter just seems to be too much to be "normal"

NT means Neurotypical, a short hand way of saying not having a neurological condition such as autism spectrum disorder (ASD) or ADHD, ADD, OCD (to throw a few other acronyms out there). That one took me a bit to figure out when I first joined too.

As for hating being observed, Donna Williams' book on Exposure Anxiety may help you. It has a lot of suggestions about indirectly confrontational methods of interaction .

My husband works away a lot too For the first few years we blamed her behaivour on many things including her Dad being away a lot. Also we thought because she was clever and acted older than she was that maybe she was confused as people were treating her like she was more grown up. She was ready for school when she was 3 but being an autumn baby she had to wait until she was nearly 4, then we blamed school itself for distrupting her routine. Then there was me being pregnant and the new baby arriving. It took us a long time to finally fit it all into place but since we have accepted AS we have been treating her differently as we now understand her differences, this has helped a lot.

M2AZ, I also had reservations about the diagnosis but have found nothing will perfectly describe any of our kids 100%. It seems when my daughter was 5 and we were going through diagnosis, it was all I was focused on, as if the diagnosis itself would "fix" things. Well, obviously after the diagnosis there was a bit of difficult time when I realized it didn't "fix" things and things were still difficult even with therapies, etc. What really started to make a difference for me was understanding that my daughter wasn't someone who needed "fixing". That was a monumental turning point for me! My depression began to subside and when I wasn't trying to get my daughter to act more "neurotypical" she relaxed a bit and so did I. In a way, I stopped taking things so "seriously" strangely enough.

Anyway, I am not implying you are following my same path but I wanted to share the story because your post brought it to mind. Of course, there are still difficulties and my daughter (age 9) still has extreme separation anxiety, but it's ok. We now don't struggle to be "typical" and we are happier and calmer now that we are accepting of each other as we are. I wish you well on your path through this diagnosis and beyond.

Getting the emotion thing down is really hard. I think your daughter is doing well, in that she gets it right at least some of the time. When they are really upset or just do not want to talk about it you'll get the "I don't know answer." Work with it, and it will get better although not as quickly as you would probably like. I would get her more than one sensory object and play around with different textures, smells etc. to get a feel for what comes her. Sometimes they like to jump around or spin, too. It really depends on the child, and can change over time. Once you get an idea of what calms her, you can let her in on it, so she can initiate it for herself. That helps, too.