From first signs to diagnosis, what were your experiences?

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Hi, I have a 4 year old girl and her behaviour is becoming too much for me to handle, shes been difficult from day one, I have spoken to the health visitor and she has referred her to the Child Development Centre who have seen her and we are awaiting a written response.

Was just wondering what your experiences were and what signs made you first aware? What made you realise your child was different? Did you have support from your family? I am the only one that sees her all the time, I am the only one who really knows her.



Her behaviours include:

Unusual way of playing with toys/things, same way every time, repetative
Cant seem to play normal imaginative games other kids play
Can be aggressive (towards me only) and have temper tantrums
Seems anxious and sad, worries over little things, paranoid
Intelligent but reluctant to learn
Can struggle to make friends, prefers older children and adults
Prefers to be on her own
Clumsy, hyperactive
Stares into space, always thinking
Very loud voice, no volume control
Says inappropriate things to people, doesnt understand personal boundaries
Doesnt enjoy cuddling, will push you away or make excuses
Has a few odd fixations
Pinches/scratches/hits herself
Absolutely cannot listen and do as shes told, will deliberately do opposite
The simplest of tasks are a battle

Wouldnt say she had trouble with communicating or understanding facial expressions, does have friends. From what Ive read she doesnt seem to match up with anything, but overlaps with Aspergers in girls (which I understand is quite different from boys) or PDD NOS. It may be shes just intelligent and struggles to handle it, but I just need an answer!!

I have no idea if she will be diagnosed with anything, I felt somewhat fobbed off to be honest. My problem is that I am told by other parents and family "shes fine, my kids are naughty sometimes" but Im not convinced. There are about 4 people who beleive me and understand but everyone else is against me. Drs are so far impartial and wont commit to anything until a full investigation has been done. I think with her being a girl its going to be more difficult to get answers.

I worry that Im pushing for a diagnosis when theres nothing to diagnose, but I just want her to be happy and right now she isnt. As she starting a new school in September I feel like I need an explanation for her differences to help prepare the teachers to point her in the right direction.

Thanks for your help.

you may find http://www.wrongplanet.net/postt193674.html link helpful, it is a thread here about the signs and symptoms that lead to diagnosis of our children.

You say she has no issues communicating or understanding facial expressions, but you wrote that she doesnt understand boundaries and says inappropriate things to people....those are social and communication issues. She doesnt have issues making freinds with OLDER kids, but waht about kids her age?

A good amount of your DDs issues my DS also had, he was diagnosed Aspergers a few months before his 6th birthday. back when he was 4, I KNEW something was going on, but he was so high functioning that it took a long time to get an actual diagnosis.

It sure does sound like your DS has an ASD, where are you getting her evaluated? Is the school concerned?

good luck!

Thanks for your reply! I was looking for other threads along those lines but didnt spot it, will have a good read of it!

I think because we have nothing official we are rightly or wrongly turning to the internet and books to try and see sense, so a lot of the symptom lists are open to interpretation and some are quite specific which I understand any ASD is going to vary greatly from one person to the next. So I had never thought of the communication and boundary thing as relating to that! So yes that would be another box ticked.

She will shout accross the road to a complete stranger "I love you!" and in restaurants she will stare at people then when they look round she will shout "Im looking at you because you are beautiful" then laugh nervously. Its these inapropriate and embarassing situations that concern me, if there was a label I could explain! This is why she comes home from school seeming sad and saying the other kids "look at me weird". Her language is very grown up so some of her class mates may just look confused at her if they dont know big long words. Its like shes too sociable!? We have tried to explain why you cant just shout these things at people and try to help her communicate in a more normal way but she doesnt understand and will take everything we say VERY literally.

She is at preschool at the moment but will be starting reception at a private school next term, this will help her as they have lots of different types of children, some with Aspergers, some gifted. As they are a private school they have no curriculum so they can go at her pace and can seperate her if needed. The new school dont know anything about the problems yet, I am unsure whether to mention them as I am alone in persuing this

At the moment she is forced to interact with her own age as they are in her class, but she tends to spend more time with the year above as they are in the same room. At indoor play areas she goes straight for kids who are 7-10 and they seemed freaked out by her advances and often laugh and run away, then she retreats and plays on her own

I think its because shes so young its hard to see whats going on, Im sure when shes older things will progress and something will eventually be diasgnosed. I just hate that in the meantime some people think Im making it up and pushing for problems that arent there. She manages to hide a lot of these things when shes with others, she reverts to a different personality, but relaxes when shes with me so all the behaviours come out. She has always been better behaved when we are out, I used to go to 2 playgroups a day when she was a baby, driving to other towns to find different ones! All the close firends she has are children shes known since she was a baby so they are genuine close friends, but theres only really two other girls in her class she is friends with.

My AS son is extremely social, always has been. He LOVES adults and older kids, and babies. He will go over and hug complete strangers if they look nice or smile at him. He will strie up conversations with anyone, at any time! He would always tend to play with bigger kids, as they are understanding of him, and younger kids love to play with him casue he is bigger and wants to play with them...lol. And with little kids he gets to call all the shots, and they usually follow his lead.

One of the reasons I nevre thought ASD for my son was becasue of his extreme affection with any and everyone! But, when I look at it closely, he doesnt know social cues or boundaries of who it is appropriate or not to talk to, to hug, etc....things my 3yo knows but my near 7yo still struggles with today!

good luck, it is a long hard road to diagnosis especially when they are HF and have a lot of advanced skills! Follow your mommy gut and you cant go wrong!

Thanks so much, thats a real help, really feeling like I should give up persuing it incase its all in my head because so many people are telling me shes completely normal!! Knowing this will help me get my point accross to the Drs too who also seem to be sticking to the exact signs as if theres no varying form the strict list of symptoms!

Edit: OMG just inrough the link, she sounds so much like your son! I feel like Im where you were not thinking it could be ASD but I just have this feeling that soon its going to come out mor ein her and it will be more obvious!

People STILL tell me my son is completely normal (which AS and all, he is) and my reply to them is you dont live with him. It can be so hard when they are HF and highly intelligent. I think my son can outsmart all the therapists he sees and he is only 6! My son can act years older then he is in certain settings, and some of the things he comes up with blows most peoples mind. EVEN professionals can be charmed by it and not see the neg.

I cant stress this enough, go with your gut. You cant go wrong. And no matter how many people say nothing is wrong, keep going until someone listens. It took me many Drs, therapists, specialists, etc...before I got the 2 who diagnosed him. The others were so charmed by his intelligence and insight, they didnt hear ANYTHING I was saying! I say write down what issues you are seeing. Try not to only talk about the good, casue they hear ONLY the good and guess that ths issues MUST be your parenting, etc...

good luck. I dont envy you, I remember being back in the pre diagnosis days, and honestly its much easier with the diagnosis!

Its already a bit of a relief reading that link and your posts. Ive stopped seeing her as a really naughty mini-adult who hates me but as an innocent little girl who sees the world differently. Things have already changed in the way I handle her behaviours and shes responding better. Im not letting things get to me quite so much and have decided to let her get on with the creative stuff no matter how messy or annoying it might seem to me. The other day she took several balls of wall and intricately wove them through and around objects all over the living room. She had brought a load of extra stuff into the room to make more things to wind it round. It was like a giant multi-coloured web, she was sat there ripping up tiny bits of coloured card, folding them in half and hanging them on the wool saying "theyre like little birds on a wire Mummy". She must have done it so quick imost planned, I was only in the next room making dinner and just popped my head round the door to check on her and it was there! Secretly my heart sank thinking about how I will have to clear all of this up later because she refuses to tidy any game as she wants to keep it. But she seemed so proud and I praised her for her creativity and took a photo, she lets me tidy things away if she knows I have taken a photo! The more destructive behaviours I will pull her up on though, like when she baths the cat in cold water and covers her in soap :/ She seems to estimate how much time I will turn my back for and consider what she can get a way with in that time so I wont know, her behaviours are very planned and often quite manipulative.

I have reems and reems of notes on everything whether I think its relevant or not! I can already see its going to take a few opinions, but after the last appt with a Dr I feel like I will be more confident next time and will know what to say. Part of my problem is a family member used to teach children with severe learning difficulties, she refuses to believe a word I say as her little girl is perfect and anyway shes the expert so she would know if she had any kind of ASD!

In my experience I found that it was really hard for other people to see what I saw in my son. He clearly had a language disorder, but I saw things when he was a baby (no eye contact) that I knew were odd.

He wasn't officially diagnosed until he was 7. But he's 19 now and things are a lot different. There's a lot more out there about autism and a lot more services. So you're lucky.

I knew a girl in my son's kindergarten class who clearly was autistic -at least to me. She was fixated on Pokiman, would stare at the TV (not cable) when there was nothing on but a blank channel. She would sneak in the the room to watch. She couldn't stand the feeling of clothes. Her mother thought she was autistic. But her husband was in total denial and refused for her mother to pursue it.

Finally, after 1st grade, her husband saw the light and they started getting help. She's extremely intelligent, but was bullied by her peers. My son didn't have that experience, but girls are different.

My advice is to go with your gut. Find a cognitive therapist who specifically diagnoses learning disabilities. You can start with universities. They often have a department of psychology that can help lead you to the right person.

Going back to my son. Although he didn't have a formal diagnosis, I went with my gut and found therapies to help him. I just decided that he was autistic because he fell into enough of the listed symptoms. Anyway, it worked for me. He'll soon be off the college.

A word of hope is that my son is different. I embrace those differences and support them. He doesn't understand peer pressure and he listens to soundtrack music because he's interested in becoming a sound editor. I've never listened to anyone who ever said he's never be able to do something. They were wrong.

I don't think I have anything to add that hasn't already been said except this: there is nothing wrong with seeking diagnostic services even if they find nothing. You are not an expert in autism or any of its related diagnoses, but you are an expert in your daughter. If you have a hunch, follow it.

If they find nothing and your daughter seems perfectly happy and nothing seems wrong, take a wait-and-see approach for a few years (3rd-6th grade is where many previously undiagnosed children suddenly show a need for services.) You can always ask for a diagnostic review if something comes up when she's older.

If I had a nickel for every parent, teacher, social worker, doctor or principal who told me my son was fine, I'd be able to buy us both a very, very nice lunch. We now have documentation of what his needs are and exactly how to address those needs (which are fairly minimal, but are critical.) Everybody's life is better - including the school's.

I don't have much to add either but wanted to reaffirm that people (family, friends, medical staff, teachers, total strangers) who do not know your child personally love to tell you your child is normal and that all children do whatever difficult thing your child is doing. Don't listen to to them. They have no idea what they're talking about. My son is more on the classic end of the spectrum, has a major speech delay and obvious behavioral issues and people still look at me like I have a third eye when I say without shame that he is autistic (he was officially diagnosed at 2 years old after he lost language skills, losing language was the only red flag the doctor took seriously even though he had a laundry list of symptoms). What really strikes a chord with me is how you said she makes even the simplest task a battle, I know how that is and it's very frustrating when the people who should be supporting you refuse to remove their blinders.

One more ting I would add is to be careful what the schools say. Your daughter could be in s pre-k program? My son was at that age. It's in the school's best interests to deny services by saying s/he doesn't need them. It costs money and they typically are strapped for cash.

If you do get any sort of DX then the schools are required to do an IEP and give your daughter support. Make sure they do it and that what they offer makes sense to you. And then follow through to make sure she actually gets those services.

In the meantime, as everyone says, you know your daughter better than anyone. Take a friend with you to your doctors' appointments for support. I find that helps me to feel stronger. When the Dr ignores the other items on the list you can insist that s/he at least comes up with an answer - even if it's "I dont know." Then you can ask where to go to find out what s/he doesn't know.

You're obviously a great mom. Have you looked for parent groups in your area? They may be a great resource for you.

Thanks very much everyone who has replied, its really helped. Today I went to a parents support group and it was so good to talk to people about it. I will be keeping quiet about it to friends and family who dont understand as I dont need that hassle!

Interesting to learn about how schools can deny it due to funding, she will be moving schools in september too so Im wondering if they just dont feel like its their problem as shes not staying. Will keep it in mind about universities being of help with a diagnosis if I need a second opinion. I will keep pushing until I have an answer whatever it is!