Our Diagnosis

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We went to my son's screening today. The evaluation said "behavior consistent with high functioning autism."
The Dr. has given me some supplements to give him, an x-ray referral for his hands, and has told me to get in touch with the TEACH program here in my area.
Even though I was expecting a diagnosis of AS/ASD, and I just knew in my gut. It was quite another thing entirely, actually having my fears confirmed. I mean you think you have yourself prepared for it, but you're really not.
And I know its not my fault, but I feel like I've failed him. He's 5yrs old, and just now got diagnosed, because I let the Dr's dismiss my concerns as a mother, that makes me feel so horrible. I wanted to believe them when they said it was just a phase, instead of sticking to my gut and asking for a second opinion.
I feel like I should switch his dr's office to a single dr practice, from the multi-doctor clinic he is at, cause he just gets tossed around to who ever is available, and I feel if they had his best interest at heart, they would have took me seriously and caught it earlier.
I have so many thoughts running through my head right now, and so many mixed emotions
And I know its not the end of the world, but there is just something about the word autism that strikes fear into the heart of a parent.
I love my son, that will never change. He is my everything. I'm just worried about the struggles and challenges ahead.

hello, Adora,

Yes, it is 'our diagnosis' and you are with a lot of folks that grew up to be wonderful people, autistic though we are There are caring and healthy people here that will remind you every day that autistic people are just people. Most of the people on WP are autistic, now that they have changed the DSM we are all autistic be we Asperger's Syndrome, PDD-NOS or Kanner's.

Be at home here, Adora. Find a place and know you can chart your course by learning how others did it, and do it too. I just want to hug you to let you know it is going to be alright. Really.

Merle

Really!

Hey, he's still the same kid he was before, y'know. A diagnosis is just a name for what it's been all along.

((((((((((((((hugs)))))))))))))) I don't know why the words are hard, even when expected, but they are. I went through that, as well, and I think most parents can relate. Maybe one needs to mourn the loss of some dream once held, no matter how silly it was? Eventually you move forward and realize you have been given keys and, of course, your child is still the same child. But where once I saw a future Olympic gymnast in my son's infant flexibility, I now see physical challenges. As unrealistic as the former most certainly was, it is still a shock to the system to lose it.

As for doctors ... I really don't do anything AS related through our pediatrician. It's just a note in their file. Colds, constipation ... all the normal childhood stuff ... being AS doesn't really change any of that, so I don't feel I need a pediatrician who is totally up on it. When I need help with AS related issues, I seek out AS related experts. There isn't any medical treatment for AS, no matter what some doctor groups would have you believe, and I rather like being with a pediatrician who keeps his skepticism on anything like that - when he looks at my son for food sensitivities, he looks for signs of food sensitivities, and doesn't just assume them because some people believe there is a link. But, that is just me ... what will make you and your child comfortable may be different. A very personal choice.

That loss of a dream is pretty much how I feel right now. Where once I was thinking grand kids (ik.......he's only 5) one day, now I wonder if he will or can maintain a meaningful relationship when he grows up.
As far as the pediatrician, I had been asking for screenings and evaluations for the past 3 years, my thoughts and concerns were just dismissed. I want my son to go to a doctor that values my concerns and observations, not tossed around from doctor to doctor in the multi-doctor children's clinic he's been being seen at.

Adora-Just know that you are not alone----It has been 2 years since my son's diagnosis, and your post still brought tears to my eyes. But, as parents, we have to continue to have hope for our children. My son has worked very hard and come a long way in 2 years, but I still have the concerns about his future. Try not to dwell too much on the word autism, and just love and see your son's strengths and weaknesses. One therapist told me this, and it helped a lot. She said "if your child had been born normal, and then became disabled or impaired in an accident, wouldn't you still try to help your son?" Of course! There are no guarantees in this life, and even parents of "normal" kids do not know what the future holds.

This will be a journey---a journey of ups and downs. Wrong Planet is a wonderful place to get support in the comfort and privacy of your home. Try not to feel guilty or blame yourself. Lots of little boys have strange little quirks and habits when they are little, so sometimes the doctors just don't know what to think. You know your child the best, and you kept pursuing it until you got an answer. You are a great mom. Do not think anything else. Now you will just continue to move forward helping your son develop and be the best he can be. Yes, you will have sad days, but there will also be moments of great joy when you see your child accomplish something that may take much more work for him than another child.

As far as the pediatrician, I agree with DW. Most doctors do not have magic answers for this. My pediatrician has annoyed me at times, but I think that even if I find another one, they will annoy me too!! So what I do is just take him there for his check ups and when he is sick. I rely more on the therapists and teachers at school to help him in his development. They are more knowledgeable about ASD anyway. If there is one particular area that you are concerned about, then you can usually get help from a therapist or a specialist then.

Things will get better, just try to take it one day at a time.

Adora, Dr. Tony Attwood says having a high functioning autistic child is actually much more satisfying than having an Aspie because where as an Aspie always seems to have so much more potential they don't live up to, a HFA is constantly improving and maturing and progressing. And don't let the 'label' throw you. Callista is right. He is still the same kid as he was before. So many children get 'revolving door' diagnosis that change as they age.
and we are here for you, too,

(WP aside) I can barely express what your sadness does to me. I guess I have never known how people feel when they find their child is autistic. To know that this is how people think when they find their loved one is like me just tears me up inside.


Merle

I'm sorry sins, there is just so much I don't know. Its just that there is a kind of stereotype when you think of autism (especially in this little hick town). I really don't think its the diagnosis that upsets me as much as all the uncertainty and questions that follow it, and wondering if I have the strength for it all, but also knowing that I'll have to.
I love my son, and I always will. Its just when you have a child you have all these preconceived notions, and hopes; when you child is born you count fingers and toes and pray blood work comes back normal. When it does you breathe a sigh of relief. Autism is one of those things that just kinda sneaks up on you, like a quiz you haven't studied for, you know about the material but not enough. That is where I am, I've heard about it, but I really don't know much about it, and its really what I don't know that scares and upsets me.

Tell me about it! I was 56 when I self diagnosed and 58 when I got my professional diagnosis. My opinions of people with autism was very cemented in my 1950's childhood and the prejudice was so deep seated that all the liberal arts college and aa and just plain common decency couldn't expunge it from my attitude. It was like being black and one morning waking up and finding yourself white. I have learned, I have learned. And being on WP has made all the difference.



Then you are in the right place, Adora. Again you are so welcome here and make yourself at home. Snuggle in and be with us that learned and educated others, too. DW is a dear friend that I trust with my respect and love and I know she can be a trusted guide to you, too. (She is a tax accountant and this is her 'busy season' so she will be around more after April 15th)
Read over the Parents Discussion all the way back to 2004, and gain an understanding that will give you hope and courage.

see? we are family already!

and you can call me Merle,

I'm not getting married. I am, however, going to be an engineer. And I am quite happy.

If your son doesn't get married, but if he is a happy adult, will you still be satisfied? Almost certainly yes. After all, that's what a parent wants for a child--happiness. A good life. Nothing about autism stops that.

Hi Adora-I think what it boils down to is that we have to just tear up the script that we had in our mind for our child and let them re-write it. I can totally relate to all that you are saying. At first, I was so worried that my son would not even know that I was his mom. When he was a baby and was upset, he would not call out for me even though I knew he had the word "mom" But now, he is running up to me and giving me hugs and kisses and calling "mom" to help him with things. He is now showing me things that are of interest to him. So now I know that he knows that I am his mom and I know that he loves me. That continues to give me the hope that things will continue to improve with the love and support that he needs. As far as whether he will get married, I don't know. However, there are plenty of neurotypicals that never marry, or are never happy in a relationship.

Sinsboldly, I just wanted to share with you that it is not really knowing that your child is different that is so upsetting. It is knowing how unkind and cruel this world can be, and knowing that as a parent, you will not be able to shield them from everything that they are going to face. That is what is so devastating. That and the uncertainty.

I wish the best to you Adora. Take some time to grieve, and let all of this sink in. You deserve it. Make sure you are taking care of yourself as best as you can, because that is going to help your son----

i agree. that's been the hardest thing for me as well.

adora, don't beat yourself up because it took a while to get a diagnosis. the same thing happened to us and it was so frustrating. my son's ped at the time was in his 70s and i don't think he was interested in the current findings on autism. he even said that he thought the whole "spectrum" thing was a crock and that only profoundly autistic people REALLY have autism. i knew there was something going on and pushed for a referral, but it took a long time. once we finally got to a neurologist, he knew within 30 seconds of meeting the kid what he was dealing with and we were finally able to get his services started.

hang in there and let yourself grieve.

I don't really have anything "new" to say, but wanted to add to the encouragement you've already gotten. I think it's completely normal to have a sense of sadness at the time of diagnosis, and that sadness can come from many different angles, which have already been mentioned.

In our case I *knew* my son was autistic and fought to get a diagnosis so I could get him services. But when the school district people came to our home and confirmed what I already knew, I was angry and hurt. It wasn't because they labeled him autistic. I knew he was the same kid as always, and if I could take away his quirks, I wouldn't, because he wouldn't be the him that I love to pieces. It was the way THEY used the label, as if he was now extremely flawed and I should be scared. They totally ignored all of the great things he could do and highlighted all of his "deficits". How depressing!

I've battled with that the whole way down this path. When I think about Jonah's autism in my own mind, it's not really a problem. Do I feel sad when I wonder if kids will pick on him? Sure. When I wonder which things are going to be harder for him than for his NT peers? Yes. We all want to protect our kids. BUT the most depressing seasons come when I am forced to demonize his autistic behaviors in order to get him the services and supports that he needs.

((((((())))))) It WILL feel better than it does right now, and now that you have the keys to get some support going if he needs it, he will feel better too.

Adora, I think you've done a great job. A lot of kids don't get diagnosed until after years of trouble at school. You've got a diagnosis at the beginning of his school years and that will make the world of difference.