I think my kid is autistic but no one will help?

Post Reply New Topic

My eldest daughter Elspeth is 3 years old and ever since the day she was born she has been different from other babies, infants, and toddlers. While she's perfectly "normal" in many areas, and actually quite advanced in other areas, she has very obvious developmental delays. She also has many other issues, like extreme sensativity to sound, and the inability to handle stimulation without going into a nuclear meltdown afterwards. (And the only "cure" is to place her in her bedroom with a book and to literaly leave her alone even as she screams and frakes out.) Etc. Etc. Etc. And of course the repetative physical movements, which I've shown on video to the doctors!

We live with this kid 24/7. We see her and hear her and know her through and through. But it feels as if the medical community is not at all interested in helping us, claiming she's fine after 15 minutes of seeing her in an office playing with stethoscopes and being distracted. Which is THE best thing for Elspeth, to be distracted. She loves to talk and has a fantastic vocabulary and that seems to be the "thing" that overrides all of the issues, as if we are imagining things. We are told that her explosions of hysterics are "behavioral" and her developmental delays are "nothing of concern." Sure, it's not at all concerning when a baby never grasps your fingers, and a child never touches a toy until after they are 1 year old and won't hold a bottle or put a biscuit to their mouth until after 1 year old and couldn't feed herself at table until 18 months and at 3.5 years old still won't potty train and... and... and... yeah, no problem. Everything is "fine" and instead of being given help learning about how to help Elspeth we are left totally on our own. Oh, while being roundly criticized by anyone and everyone as if we are ignorant lazy heathens that can't be bothered to teach her to potty train or drink from a cup or recognize colours or know her age... (Although there are times when she can do these things just fine, but they are the exception, not the rule.)

So, am I insane and imagining everything or has anyone else had this problem of not receiving any practical assistence from "The Experts" while being left to flounder around on your own? While people thoughtlessly brush aside your observations and behave as if you are an idiot?

sry to hear you have these probs
there is a couple of things...
1.. keep searching for help.. if u feel the dr is not getting it, move on.. dont waste time waiting for ppl to see the light.. they wont
2. ignore idiots
3. realize that you can give best support yourself.. pro support is A JOB for some1 and ppl are lazy
3. read stuff
4 just hang around with yer kid and trust own sense of what is right

take yer time

<<Moved from GAD, to parents' discussion>>

>> "While people thoughtlessly brush aside your observations and behave as if you are an idiot?"

I've been wondering about it for years. And I still have no answer.

I just discovered that I could have AS quite recently. For years I tried to put some order in my life (finally after discovering AS I'm doing it). I read lots of books about psychology, I talked a lot with friends... and the only thing I got were the 'standard' psychologic answers. When I tried to explain that my mind just didn't follow the rules, that it just 'worked otherwise'... well, it was like beating a dead horse. That moment, you really want to stand up and to shout at this person 'Hey! I have a f** higher IQ that most of people out there so, please, don't treat me like I was an idiot!! !'

So, in my experience, the first phase is frustration. The second one is anger. And the third one is... well, you become VERY patient with people because they're not gonna change. One of the advantages of being 'different' is that you can watch the 'normal' people from outside. And one of the things I have noticed about 'normal' people is that they are usually very linked to emotions and different feelings (like belonging to a group), and when they deal with something close to them, they just lose the ability of thinking rationally. And what it's even more surprising (for me) is... they're absolutelly blind to it. I can find a evolutionist logic on it: probably this is the better psychological design for the survival of the group. So in my opinion, it's nobody's fault. People are just like that. And when they're blind... they're blind. C'est la vie.

One piece of advice: don't take anything for granted with your daughter. For example: I hate looking at the eyes of the people when I'm talking with them. It's distracting. So when I want to focus in what a person says I look elsewhere to avoid distractions and concentrate in what he or she is saying. When I look at the eyes of a person during a conversation it means that I'm not really paying attention to him/her. So, for me, not looking to the eyes is a sign of interest. At the end, many problems come from using different languages.

It's usually the children with severe language delays who get early intervention because language delays are fairly concerning and the opportunity for people to reach their full language potential quickly diminishes after very early childhood.

With children who don't have significant language delays, such as children with Asperger's Syndrome, it's unusual to get a diagnosis before the age of 6 and even though most probably did display behaviors before then, I personally would be hesitant to prescribe such a label to a child younger than 6 because there are many things that children do grow out of.

I couldn't say what your daughter has, but I would make a list of the things she is delayed in and work on addressing those. If you feel truly concerned that she needs intervention that can not be had without some type of diagnosis, I would take her to see a child psychologist who specializes in autistic spectrum disorders. And, I would quiz them on differences in manifestations between girls and boys. The father should be present as well.

Maybe leave ASD out and jsut make a list of her issues....people might be writing her off as not having ASD, but if you can at least get her help for some of her issues, and maybe when she is older get her the diagnosis.

I had similar issues getting my son diagnosed. I went from professional to professional, as your daughter, my son can behave pretty well in an office, and that is all they looked at. Not the big pic, and they dont LIVE with us and our children to see them in other settings. It was frustrating, upsetting and mind boggling to say the least. I FINALLY hit on a therapist who took my concerns for real, and consulted with a psychiatrist who we finaly sawa nd diagnosed my son ASD, but that was near 6, and he has had some sort of issues since he was a baby as well.

Hang in there, it is soooo frustrating to KNOW there is something not right and have NO ONE LISTEN...keep going until someone usnderstands you. Is your DD in school? Do the teachers have any concerns? Sometimes they will listen to a teacher over a parent...

good luck.

I would seek out either a neuro-psychologist or a developmental pediatrician in your area for an evaluation.

couple of thoughts

1 You should take her to a doctor who specializes in Autism.
2 Be aware that autistic girls manifest symptoms differently than boys. Many girls with autism, for example, are good at copying the behavior of those around them. This may cause them to appear neurotypical, especially to non-specialists who spend only a few minutes observing them.
3 Just in case you live in France (username suggests maybe) you should know that some very bad things have been done to autistic people there in the name of therapy.

<<<THIS, and what the above poster wrote. High-functioning Autism is for some reason notoriously difficult for doctors and therapists to see. If you read through this board, you will find that many of us started looking for help for our kids at around age 3, but there are many - like me - didn't actually get help until much later.

Find a specialist in developmental delays, and also - try going through your insurance first (no sense in spending your own money unless you have to.) Insist that your doctor give you a referral if one is required. Check with your local public school system and see if they offer developmental screenings for free (they should.)

A good way to assess whether or not the specialist you've chosen knows what they're doing is to see if they use the instruments provided on the CDC website here: http://www.cdc.gov/ncbddd/autism/screening.html (see the part about screening tools, specifically.)

Firstly what a lovely name I have a 4yo daughter and I have been having similar probems. Like you say, as her mother I know her better than anyone and I know what I see 24/7. She was of course perfectly behaved when we saw the Doctor and at school and at Grandmas house etc! This is why when she was a baby I used to go to 2 playgroups a day, I was aways out, she was so much happier out of the house. Still is, we never stay in because she starts wrecking things and hurting the cat, getting angry with me and hyperactive etc. Its exhausting and I never have time to do normal things like make phone calls, do shopping or cleaning, but it helps to keep her occupied so we do it. We are waiting on a diagnosis at the moment and Im feeling thoroughly fobbed off and I get the feeling I am going to need a second opinion. My little girl was always different right from birth and now I have a younger daughter I can really see a huge difference. All her life people have given various excuses and its been swept under the carpet, its only now shes 4 its really becoming more apparent as her friends grow out of the things shes still doing.

From talking to parents with autistic children I have come to realise a few things:

* Dont bother talking to people who dont understand, they tell you your daughters "fine" and they say "Oh my kids are a bit naughty sometimes its normal" and make you feel like you are imagining it and maybe you just arent coping with a naughty child, you do not need this extra stress so avoid it!! They say this because they dont know what else to say and dont really mean any harm but it makes you feel stupid and as though you need to make excuses for your suspicions. I find myself saying "oh its probably only mild but we are getting it checked out just in case, shes probably fine". Why do I need to justify my actions? If a child is ill we take them to the doctor.

* Seek advice from groups, I went to an autism group today despite having no diagnosis and it was such a releif to talk to other mums (not medical proffesional, but people who will genuinely understand because they have been there!). I found myself having a lot in common with them, let it all out and you will feel better!

* Get advice on how to deal with autism and use these "autism friendly" techniques anyway. Just seeing her differently will help to ease the difficult behaviour. I have stopped seeing my daughter as naughty/defiant/ignorant but just realising she thinks differently to me and I need to make allowances for that. Lifes been a little bit better since that dawned on me and she seems happier! I now understand why she doesnt listen to me, she cant, it takes her brain up to 10 seconds to process what I have said and in that time I have asked her again 4 more times and am getting progressively more annoyed with her for not doing it, but this is bombarding her with info and she panics, so I have more patience with her now and she does it, in her own time but she does it. I need to allow more time in the mornings to get her ready and not rush her.

* Think about what you say to her when you give instructions. Make them concise and to the point, also dont allow her to use loopholes to go ahead and do what you just said not to! My little girl was about to walk out of the front door on her own, like Dora the explorer and I shouted "dont you dare go out of that door by yourself!" so she went to the back door instead!

* Go with your gut feeling, you know her best and if everything was fine you would not be here sharing your experiences with us! From what I have read signs can be different in girls and boys, often girls can hide symptoms as they mimic their peirs. But they cant do it all day every day, she relaxes around you, be flattered by that if you can and know thats why you get the brunt of the bad behaviour! Anyone who cant see it cant be that close to her.

* When you look at the check list of signs try to think laterally. I misinterpretted some signs and she didnt seem to fit. But having spoken to people who have children diagnosed I have realised yes she does have communication problems despite being very very chatty with an extensive vocabulary she does not understand social cues, ie when to speak, how loud to speak, what to speak about and when to stop. Also at first she seemed ok at recognising emotions, when you translate that literally "does she comfort some one who is crying?" yes she does, but I have taught her to do that!! She doesnt however know when to stop when shes talking she cant see when some ones not interested. Also she doesnt have any obsessions as such, but thinking about it closely she does have fixations, these can change daily/weekly/monthly but there is always some fixation there. Something she keeps doing despite being told not to repeatedly. Reread the signs and see if there is anything you have missed.

* Dont neglect yourself and your own feelings, how are you coping? Could you be depressed?

* Dont doubt yourself. You may find it easier to keep all of this to yourself (talk at the groups and let it all out there where you will be understood) until you have a diagnosis if necessary, Im avoiding the subject with the majority of my family because they wont listen about it, I dont want arguements so Im not going to tell them until its certain! If I get a letter from a Dr with a confirmed diagnosis I can show them. I dont want to keep going over the same things with them and fighting my corner.

* Ive heard of lots of people having to get two or three referrals so dont give up! If you are not happy with the diagnosis get another one and really think about what you tell them the next time. I realised I gave too much info and confused the issues, if I need another referral I will pinpoint the odd behaviour only and be more precise, focus on the worst problems.


Finally, no you are not crazy! I took my daughter to the GP and was cut off mid-sentence to be told "we cant diagnose autism until they are 7". I never mentioned anything about autism, I never got to talk about the behviour problems I was having and I just left feeling like he thought I was a failed mother. It sounds like you are doing the right thing, keep at it until you are satisfied! Good luck! x

Welcome.
Visit often.

As the posters above have said, the BEST thing you can do is learn from this board and from other parents all of the things you might be facing as you go ahead. The first thing to realize is that your daughter is going to think differently and understand differently at times than you do. Don't get frustrated with her... try and put yourself in her shoes. She's a smart cookie; there are reasons for EVERYTHING she does... and they might not make sense until you walk thru the mirror and become "Alice" for a moment. And if that's too tricky at times, well... feel free to bring your questions and problems over here. You've followed the white rabbit this far... sometimes you can learn more from the kooky critters out here than the safe&sane, dull&dangerous folks out there in "the real world".


** REMEMBER though that you will often get conflicting advice here, and some people will sound like they're giving you a hard time and some people will sound like they are giving you "end all be all" orders/instructions (I've been accused of this) so take what advice you get here with a grain of salt. And a pinch or two of oregano.

I wish there was a "like" button...

papa told me the same thing happened to him with me that he believed i was autistic and nobody would test me. they just said i had ADD and put on a bad drug (for me) which made me crazy and very suffered.

i finnally got tested at 18 but by then the damage was already done. papa tryed to send me to collage before i got tested for autism and had a nervous breakdown. i didnt understand anything that was going on.

i belonged in special education but was "forced" into normal classes and really struggled couse of the class size and everybody ignored me. i wish i was in speical education.

papa told me they passed me through elementary school just to get rid of me. the only things i remember are basic grammar, basic math, and typing. and i type much better than i talk

now i live with papa and he takes care of me and i am going to go to the autism community soon and make friends.

Haha I keep looking for a like button too, facebook has taken over my life!

I agree with what a couple others said. Try going about it 'backwards', so to speak.
Address the sensory issues and the behavioral stuff without 'heading' for autism at the get-go (though I totally agree with trusting your instinct . . . it's just sometimes people are blind and it's easier approached that way.) Then, you start tackling some of the issues . . . and along the line someone is going to recommend further evaluation. But at least you can find some progress without 'waiting' on a diagnosis.
My son is super bright--we've been advised twice now to get his IQ tested, but haven't yet. He had many similar issues as your daughter. He is currently getting speech therapy--he has no real delayed speech, but has processing issues, which causes most of his behavioral stuff. And he is now starting Occupational Therapy for sensory issues and various motor skills, which I think will help a lot.
We actually had a doctor diagnose him with Aspergers (he s almost 5); however, the process for that started almost a year ago. And since then a lot of people have questioned it. HOWEVER, most people who know him very well and who have experience with such kids don't.
Definitely, make a thorough 'laundry list' of what your main concerns are. Get an OT Evaluation (I'd start there, since sounds like she definitely may have sensory issues like my son), and they KNOW kids and their issues. Such a huge part of autism seems to be sensory anyway . . .
It takes awhile. We've been in this 'starting up' process for a year now--all the evaluations and such. Sorry we started so late . . . he was 4 when we finally realized we needed help. So, at least your daughter is younger . . . though, as many said, often an 'official' diagnosis won't come until much later.

They are supposed to take behavioral issues into account. In our son's case, those were the first signs, and they existed very early on.

I don't know what is available where you live. Here is the U.S, from birth to 3, it is done through the counties, and after that, through the school district, even if your child is not currently in public school. (There are also private avenues, but often that is hard to navigate if you don't get the right person to assess things)

Where you are, do you need a referral from the GP/Pediatrician, or do you have other options? If you post a country there is probably someone on here that will be able to give you more concrete advice on how to proceed.