frustrated

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Hi, I am new here. Just joined yesterday after always coming back to my gut feeling about my son.

I've finally got the ball rolling and made an appointment through autism organization to speak with them about my son.

Noone in my family or my friends understand

Yeah, that is hard.

Some people have better luck with friends and family than others. Rigidity tends to run in families so often families can have have very rigid notions of how kids behave and how to fix what they consider to be child-rearing problems. Some of them see their own issues in the child, and the labeling tends to really bother them.

Pretty much when I need support and understanding, I come here.

Welcome, this is a good place to come and vent or get advice or just read about other peoples' experiences so you don't feel so alone. When it comes to family and friends accepting that your son is different, try to remember that it is something like the grieving process and everyone goes through it in their own way. Some people may get stuck for a long time at the denial stage. While it would be ideal if they could come to acceptance more quickly and easily and provide you more support, some just may not have the capability to do that. You have to keep moving forward in the way you know is best for your son and your family regardless of any nay-sayers. Good luck, getting through the evaluation process can take time so hang in there!

Hi, welcome!! Well you are inthe right place! I have been fighting for a long time to convice my husband and his family of the problems my daughter has. I too have stuck with my gut feeling, Mother knows best! Now we have a diagnosis and still people wont believe me! Argh frustrating is the word!

I have noticed though that the certain people who dont believe show signs of aspergers themselves, they see autism as very black and white, you have it or you dont, but as we all know its a huge spectrum. One family member taught in a school for children with severe autism and so will understand high functioning autism!

The break through I had was watching the film Temple Grandin with my husband, after that he realised he had a lot in common. Plus his obsession with numbers and graphs meant it was easy to get him to do an online test! He now believes me, one down but many more to go. I have since bought some books and passed them around the family and slowly they are recognising the signs for themselves. I think people have a fixed idea of things and are not willing to learn, a few books, documentaries and web links later they come round.

Good luck and stick with us, you will get varied responses from this forum so its great. Adults on the spectrum, NT Mums, ASD Mums, so many different angles on it.

We understand.

Thank you, its great to know that there are people out there who understand what I mean.

Yes ConfusedNewb, my husband is similar in that way. A step forward, then a step back at times.
And thank you all for your comments, it is helpful and I appreciate the feedback. I dont know if they are just telling me what they think I want to hear, or not.

I put my first post up when I joined and just sat steering at my screen waiting for a reply. I found myself crying in relief when some of the members responded positively. It was a reliefs in the way that they could relate to some of the things Id stated about my son.

Does anyone know how long the evalution process takes?
Im just curious as to what this all will entail.

I have to admit, I will be relieved if he is given a diagnosis. It will mean there has been a reason for all the heartache over the years.

My daughter was diagnosed in the span of a few weeks. My son took years. I think it partly depends upon where you live and partly depends upon how old your son is. Probably how straight forward his issues are, too.

I just want to forewarn you a little, so you aren't surprised. Relief may not be the only feeling you have. I was fully expecting the diagnosis for my daughter. In fact, I accepted it before I even got it, but it was still a bit of a kick in the gut. With my son, I had gone through years of knowing something was "off" but not being able to find anyone who "got it" and when I finally got the diagnosis, I still felt bad. I'm not saying you won't be relieved. And I'm not saying it might not be different for you than it was for me. I just kind of wished I would have known that even though I was fully prepared, it was still going to hurt to actually hear it from someone's mouth and see it on an official piece of paper.

We had several diagnoses, and lots of different things diagnosed over time. Finally, we went to a specialist who did the ADOS test along with several others. After the testing they recommended having his speech tested for pragmatics, which was enlightening.

We had to wait about 5 months until they had an opening for the test, but once we got in, things happened over the course of a month: the ADOS was an entire day (4 hours) and then back a few weeks later for a consult to explain it all in layman's terms (very important - if they miss this step and only give you a report loaded with numbers go elsewhere) and then a psychiatrist consult to discuss meds (which we didn't do) and then another couple weeks for the speech test. They also gave us and my son's teachers a bunch of forms to fill out, including the ASDS (an autism screener) and the BAS-C (a general screener) Just answering the questions made us feel better, we could easily see that there was a lot going on that we'd been excusing or wishing away.

After that, the therapies started fairly quickly - and amazingly, we started to see results in just a few months; I think at least in part because we all finally were on the same page and understood (including my son.)

The US CDC has a good listing for the standard tests for autism here: http://www.cdc.gov/ncbddd/autism/hcp-screening.html

Good luck to you! I hope you find the tools you need!

Yes people will just tell you they are "ok" and "normal" without thinking you might be relying on their input to some extent. But they dont know your child as well as you do so you just have to nod and not mention it again! Ive found some friends have been really supportive and others dismiss it, so I know which ones I can talk to now. I have just finished reading Aspergers in Pink and it could have been written about my life! I would recommend reading some books like that, not the heavy going text book stuff but mor elight hearted stories of people in similar situations. It really helps when you are in the process of diagnosis to keep you on track and reassure you that you are doing the right thing. You may come accross Drs who deny it too!

We have been trying to get to the bottom of my daughters behaviour for over a year, at first we were dismissed by the Dr, but then I realised that was just one rubbish Dr and I had to try again. I went down a different route, through the health visitors and pre-school and got to the same point I would have if the GP had of referred me in the first place. We are nearing a diagnosis now so it does take a long time. I dont know where you are form but here in the UK there are months between appointments, weeks later you get a letter and a write up with a follow up appointment and its just so drawn out. All the while I have been reading up on it and deciding on my own diagosis, writing everythig down and filing it. So now when I go into appointments I feel like I have more progress because I have a file full of stuff and I know what they are going to ask (same thing every time!).

At first I was upset that she might have problems but now after diagnosis I am so happy! Its a huge weight lifted and you feel like you are moving forward rather than going round in circles so stick with it and get that diagnosis, even if its a "nothing wrong" diagnosis its something and you can always come back to it later if things dont improve.