Aspergers/ASD support thread

Savvy_Sue

Dummie, I'm really glad your hearing appt has come through so quickly. And I hope that having your HV 'sort' this for you will help your relationship with her. I know it's hard when you think she's thinking of you as an anxious mother - aren't we all - and has been brushing your concerns aside, but it does sound as if she's trying for you!

lil_me

Pleased to hear you are being seen sooner rather than later, keep us posted on how it goes Thoughts with you as I know it can be stressful

[Deleted User]

Dummie, you're such a good Mom for wanting to get to the bottom of this. My son is 3.5 and he too was diagnosed as being in the autistic spectrum when he was 3. I kept on telling everyone that he was different and no one believed me. Some days were better than others and I was in denial. But deep down I 'knew' so I went to see my GP who referred us to see a Peditrician. I was right. He was diagnosed as being in the autistic spectrum and referred him to an Early Intervention team (speech therpist, OT, pre-school teacher, educational pshycologist etc.).

From what you say, it does sounds like your son could be in the spectrum, so I am delighted that you got the ball rolling. I hope I am worng of course, but a diagnosis doesn't change who he is, in fact it will mean 'getting help'.

My son has made enormous progress since starting therapy 2 months ago. His eye contact now is great, he is more affectionate, but he still lacks social and communication skills. His understanding is not that of a 3.5 year old, but he's getting there. He is the love of my life and I wouldn't change him for the world. I have seen the progress he has made so far and I know that if he can do so well after 2 months of therpies, he will be ok. Best of luck and keep us posted. !!{HUGS}}

jimsmum

my son is 2 and a half and still not talking .odd word here and their but nothing significant.about six months ago i realised he was drinking way too much,wasnt talking ect and like you looked it up on the web to how much a child of his age should drink and came accross this website(dont know what it was now though).I answered the questions and it suggested that it could be autism,to put it politely i s**t myself,deep down i knew he couldnt be though.
I worried myself senseless and contacted my HV she said not to worry and shed contact the speach therapy and hearing test people.Finally he will be going for the hearing test on wednesday and starting speach therapy on thursday.
I dont thing their is anything wrong with my beautifull boy.hes just lazy and knows he can get what he wants through other forms of communication.
I cant help you with him not wanting to play with other children as my son doesnt start nursery untill jan and has never really been around children so ill soon find out.
I just want to let you know you are not on your own.
Einstein didnt talk untill he was 4!!!!!!!!!
you might have a genius in the making!!!

jellyhead

glad things are getting going for you dummie!

my 16 month old has started saying mum, but he doesn't mean me he means his dummy!!

he rarely makes a sound and when he talks it's in a soft little whisper, really really cute. one day a couple of weeks ago he said milk lots of times, and he said cheryl (my sister) lots of times. he tried saying lots of things and after his bath he said 'bath all-done' and when it was time for collecting his brother from school he went to the door and said 'go get wa-wa'. since then he's not said a word. he can go for weeks or even months without saying anything, i don't know any other children like that lol! but he puts all of his attention towards physical things and is always planning new physical skills to learn, perhaps talking isn't high on his agenda although he also makes those sweet little noises when he reads his books.

fingers crossed that you get the help he needs soon. have a lovely christmas!

Nikki

Dummie wrote:

It's very contridicting isn't it. For example, when I called to ask if DS will have a 2yr assessment. The answer was no unless I requested one. Doesn't this mean they are expecting parents to be aware of any problems and to bring it up? If so then why the attitude when we do bring it up? If they were not expecting parents to be aware and bring up any concerns then surely they should assess ALL toddlers once they reach 2yrs!

It makes me so angry.

Nikki, I'm sorry you're still not getting to the bottom of DS1's 'issues'. We'll fight this together. Thinking of you.

Had DS1's hospital appt today. This time I wrote down everything I thought was a unusual about his behaviour and the things that cause problems and took it with me. From this info the psychologist has said he is on the autistic spectrum probably Asperger's, but will need more tests to confirm. ADHD is often misdiagnosed when a child has Aspergers but also very commonly occurs with Aspergers. It is likely he will have a dual diagnosis of ADHD and AS, but at last will get the help and support he needs. I hope this gives you the confidence to persevere and get the help your DS needs - you will get there.

Dummie_2

Hello Nikki

Thank you for up-dating. I'm glad you're being listened to and that they'll do further test to try to get to the bottom of everything. When are the test scheduled? Pls keep us up-dated. You are still in my thoughts.

As posted previously, we've got the hearing test coming up on the 19 Jan 07. I'm just trying to go with the flow and not get too stressed about it. A few posters have said that no matter what, a diagnosis doesn't change anything. That it doesn't change who LO is. I'm keeping these words in my thoughts and in my heart because it's true. My DS will always be my lovely, darling little sweetie whom I love more than anything else.

linlin_3

Dummie wrote:

Hello There

Just a little up-date.

We received the letter re the referral for a hearing test. Called up the hospital. The waiting list is 44weeks:eek: .

Ridiculous! Here's what to do: List all the hospitals which could give a hearing test. Phone the appointments secretary of each one and find out the waiting list. Offer to take any cancelled appointment.

I went through almost the same experience 18 yrs ago......my child is now at uni studying for an academic degree. He was diagnosed by someone whose clinic was under threat of closure because of lack of demand!!!

You could also get in touch with Great Ormond Street. Aim to get appointments with the chief psychologist and the speech and development department. ALWAYS phone the appointments secretary, make the appointments and get your GP to confirm after the appointment is made.

You must make and take the initiative. If you allow the system to take control, it will!

Something which helped my child a great deal..........and it's SO simple......showing photographs of a person's development. E.g. photo of someone as a baby; one year old; four years old; school age; teenager; etc etc. Essential to include a photo at approx same age as your child.
Make your child aware that he/she won't always be a child, that there will be growth and development into adult.

Dummie_2

Hello There

Just an up-date.

We went for DS's hearing test on Friday. We were in a room and sat behind a table with DS on my lap. A lady sat in front of the table and used toys to distract DS and to keep his attention. Another lady stayed behind us and made/played a series of 5-6 different noises. For the first series, DS turned his head to seek out what the noise was. However, when they repeated the series of noises for a 2nd time, DS paid no attention whatsoever to any of them. He just continued playing with the toys the lady in front of the table were offering him.

They came to the conclusion that there is nothing wrong with DS's hearing because he obviously heard and responded first time round but they are at a lost as to why he paid no attention the 2nd time round.

They are now referring DS to see a child specialist who will carry out a more comprehensive hearing test. They also said that the child specialist should be able to shed more light into why DS isn't responding as expected. I asked if there was a long waiting list to which they replied 'not usually' so hopefully we won't have to wait too long.

I'm not too worried. Just glad that we've got one foot in the door and the professionals are looking into it.

Thanks for reading.

Dummie

fsdss

thanks dummie.

the test you had was for a baby (9mths) and not for a child of your sons age and it is not an accurate test only a guideline. he was probably turning because he knew someone was behind him. glad he has been referred for another hearing test just for confirmation, in my area the wait is about 6 weeks so not too long i hope for you.