((Julie)) I am so sorry you are being so frustrated by all this.

My elder son has a severe learning disability, and what Aunty says is right - it's like a war - a series of battles for everything your child needs and deserves. I really wish I could say otherwise, but the parent that shouts the loudest gets listened to (so wrong, some people just don't have it in them/have other problems and can't).

I agree with whoever said to keep a diary, with a note of who said what, and when. And a note of appointments made/cancelled etc.

And a group/charity, such as The Autistic Society, might be able to help you. I think they have local groups, too, so you can speak to other parents and find out what they did/are doing. And get some support for you and your husband, too.

Teah is lucky to have you fighting for her (hug)

I can imagine that meeting others who have walked this road before...online or in person...will be helpful to you, Julie. Your little girl is lucky to have parents who love her so much.

When my son was diagnosed with something later in his teens...not autism...it is hard. Don't expect yourself to have all the skills or capacities to deal with it all at once. It's a workout and you develop that as you go along, so be patient.

Julie, I don't have any other advice to offer - you have got tons already here - just wanted to send you good thoughts. This is unfortunate that you have to play this waiting game but I am sure persistence will pay off in the end.
I wish the best luck to Teah and all of you!

Julie,
I cannot offer anything new but strongly suggest getting in touch with other parents. How astute of you and Ben as parents to notice things at such a young age. One thing I have learned is that too much information before a professional has actually come up with a diagnosis can cause excess anxiety that will take away from the task at hand which is too continue with your persistence.

Prayers and thoughts with you!

No advice apart from what others have given, but I do want to express sympathy and solidarity, as my daughter is "spectrum-ish" (not completely diagnosable, but definitely quirky...has to go to a special school where most kids are on the spectrum.) And we began our investigations when she was two and a half, and took her to see many, many people...and played many a waiting game. It is hardest when they are your daughter's age as you feel (rightly) that you need to move quickly to get help. And help seems so close...and yet so far....

Perhaps I can offer a nugget of hope. Two years ago we finally found the combination of supports that made a difference for our daughter (who is now eleven) and we are living in a different world. She is SO much happier and doing so much better, and is just a delight. Her own amazing personhood is shining through!

A book I have found very helpful for school and just understanding our amazing child is Different Minds by Deirdre Lovecky. http://www.amazon.ca/Different.....1853029645

Julie, I have nothing to add, but I want to wish you strength. Your careful attention and diligence on this matter is applauded. Sending you many warm thoughts and hugs.

I cannot give advice as the parent of a child with Autism, but I do have some experience as a little sister.

My brother was diagnosed with Autism about a month after I was born, and my parents knew nothing of the the disorder, only what the doctor told them. They struggled for some time get him the help he needed, but they were persistent (as you will be, I'm sure). Sometimes you'll have to push past negative people, and the things they say. And it's really tough. But you have an amazing group of women at the ready to comfort, console and encourage you when things get crazy.

My little bit of wisdom is this: Your child will only go as far as you believe they can. You have to show your support and love in everything you do for her. Because of all the support my parents gave, my brother is light years beyond where various behavioral specialist said he would be, ever in his life. He owns his own business, he's an amazing artist, he has an active social life and he's smart as whip.

One more thing... My mom was a SAHM before the diagnosis. Afterwards she learned everything she could about various learning disabilities and disorders, the education system and what they were obligated to provide for kids with special needs. She ended up being an advocate for over 100 kids in the L.A. area. My brother's diagnosis gave her an even greater purpose in life. Maybe this will open your eyes to something new, too

Oh yeah, and you have all of my cyberhugs, support and good vibes coming your way If you need any kind words, or support, you can always PM me...

Oh Julie - I am so sorry that you are going through this! I don't have any other advice to offer you other than what has already been said, but please know that I am thinking about you and your family - and when you get just really frustrated in "fighting the system" don't forget to breathe - nice, long deep breaths that can help you relax, get focused on what is most important, and then carry on with what you need to do, with a sense of purpose and confidence! Much love!

I have nothing useful to add, other than my heart goes out to you, Julie, and I hope you see some satisfactory action happening soon. Nothing is worse than waiting on the health care system for the care you need!

THANK YOU so much, you will never know how much I appreciate your support and wisdom. In Scotland at the moment there are 8000 people diagnosed with Autism Spectrum Disorder, this works out of be 1 in every 100 people or 1 in every 500 girls. I have accepted this is a label which in not applied lightly in the UK.

@ Louise, Freckles and Lynne - I can understand professionals reluctance to label a child with ASD, what I hope to obtain is 'actionable advice' (thank you for that term Angie) for dealing with her current more tangible difficulties such as her speech, movement and anxiety.

@ April, Debbie, Freckles and Judy - A support group sounds like a great idea now that I feel ready to discuss Teah's issues openly. Thank you for this sound advice.

@ Laura - I promise to be louder than a fog horn when needed.

@ Katiepea, Patty, Butterfly Lady and Jonesy - Such practical advice, a diary sounds like a positive step.

@ Khris - I hoped you would comment, I do remember reading your Son has autism and have also noted what a fantastic and typical teenager he appears to be. Thank you so much for sharing your experience.'s

@ Patty, Teah's hearing I wish to get assessed pronto, it could explain the delays in her speech and her strange reaction to sounds.

@ Steph - thank you for sharing and giving such actionable advice.

@ Joy - thank you for reaffirming the correlation between health and diet, this is acutely on my mind as Teah struggles with the texture of many foods. Giving Teah a balanced diet is a challenge but one I intend not to shirk.

@ Jonesy - thank you for your perspective, both Ben and I have a history of severe mental health in the family (schizophrenia and bi-polar) and how long an accurate diagnosis can take. I'm not interested in putting Teah into a neat little box, she is her own person with her own needs and we have to meet those needs as best as we can.

@ Sarah - I agree Crappy is the term, particularly as I am potty training my youngest

@ Suz - I am really happy the pieces are finally coming together.

@ Keepthekey - the effect of this process on my youngest daughter is on my mind. Your Mother sounds like a tremendous lady.

@ Sally, Michelle, Polly, Celia, Anne, Aunty, Angie, Queen Mum, Rae, Taylor, Debbie, Sara, Sveta, Jean and Heather - your good thoughts mean more than you could ever know. Thank you so much.

p.s. I'm sorry if I have left anybody out.

@ Marley - stop and breathe will be my new moto

@ Elisabeth - thank you

Such wise advice here already...no need to add more. Sending you strength and calm as you start to navigate the "system." You are doing exactly the right thing by being an advocate for your child.

I have no new suggestions, Julie, but just wanted to say that I completely understand your frustration with all the waiting. My sister's son is being tested for Asperger at the moment, and over here it all takes a very long time too, while as a parent, you want to know as soon as possible what exactly the issue is so you can then try to determine what to do next and find the necessary support.

I'm sending lots of positive energy for you, Teah and the entire family. Hang in there!

Julie, I have nothing to add and no experience to share, just wanted to say that my heart goes out to you. You and Ben are wonderful parents and ahead of the curve. Stay strong. I'm thinking about you and Teah.

Yes, Julie, that is *precisely* what I meant :). This waiting period is very emotionally draining, but then the whole testing/diagnosis process can be insane too....I remember when my daughter was having eye problems when she was a few months old. We were referred to a specialist (a pediatric eye surgeon). I was absolutely expecting her to talk about mild interventions, like patching her eye, etc. Instead, she started talking about surgery, within the new few weeks. I remember so vividly the feeling of trying to listen, but being so overcome with anxiety and fear that I could not process what she was saying to me....Anyway, as I said, trust your gut, go to these meetings with the docs etc. in pairs if possible (so if one of you is having a hard time following, the other can pick up the slack), and take good notes, as Katiepea sagely suggested! I will be thinking of you.

Hugs to you. I have been waiting to write a novel here, thinking about all I want to say, and now I see it's all been said by the wise, compassionate voices of YLF. I work with parents of kids with special needs often, and the biggest message I take from them is that constant advocacy for their child. They persist, and document, and argue, and lobby, and write letters, and appeal., and speak out. And it is all done with endless love.

The professionals you will deal with may or may not be helpful, but the community of parents and caregivers you will find are going to be your biggest source of information and support. Do not be afraid to ask questions and insist upon getting information - I can tell you that persistence and determination make ALL the difference.

Hugs to you on this journey - your beautiful girl is precious.