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For parents of autistic children - how old were they when you first noticed the signs?

Eliza

I am a single parent of two children, I have Asperger's Syndrome and was diagnosed at age 6.  My son will be 2 years old next month and I believe he is autistic, but because of his young age nobody is listening to me and i'm getting very little support.  All i'm being told is "he will grow out of it."  Has anyone else experienced this?

My son was born with colic - he screamed and screamed from the minute he was born until he was three months old, sometimes for 6 hours on end without sleeping or feeding.  As a newborn he slept about 6-8 hours a day.  When he was about 9 months I noticed it was very difficult to sustain eye contact with him, and at 15 months I was convinced he couldn't hear because he spent all day in a world of his own and paid attention to absolutely nothing else.  Turns out his hearing is perfectly fine.

Currently he has no language.  He occasionally imitates words but it can take me up to half an hour to get him to imitate one word - and even then he only repeats the last sound.  He doesn't interact with other children at all (barely even acknowledges them), doesn't appear to understand the majority of what I say to him but does recognise certain key words like "juice," "dinner" and "bed."  He very rarely makes eye contact, he has never used any form of body language (waving, pointing, clapping etc) and he still wont, despite me giving him a lot of encouragement to do so, and his only form of communication is squealing and crying.  He hasn't got a clue how to let me know what he wants or needs.  He has tantrums which involve a lot of repeated head banging and recently he has become aggressive during a tantrum, hitting and kicking and no matter what technique I use it takes roughly 45 minutes to an hour to calm him down and figure out what the problem was.  He is extraordinarily fussy with food - all he will eat is toddler tray meals, bananas and occasionally toast.  He staged a five day long hunger strike at 20 months old when I attempted to get him to eat anything else.  He plays with exactly the same toys in exactly the same order every day.  He stacks blocks, stacks legos, stacks books, and if he can't stack it he lines them up.  When he plays, he is in a world of his own - he doesn't listen (unless you say "dinner" or "juice"), or appear to acknowledge anything else at all.

He has recently been assessed has having a severe speech delay.  The results of his assessment show he has the speech capabilities of a 6 month old and he is very nearly 2 years old.  He also has a global delay including visual, manipulation and language but this is not quite as severe - here they've put him between 12-15 months.  All his traits line up with the signs of autism in children, and because i'm on my own and I have an older daughter to look after aswell I have virtually no support from anyone.  My family think i'm "jumping the gun," professionals i've seen think he will just "grow out of it" but children's services think its my fault that he has such a severe delay and that it must be down to poor parenting!  My older daughter is 5 years old, and has no problems at all.  She's very intelligent and does well at school, popular with her classmates, not particularly fussy with food, doesn't have any of the traits my son displays at all - and she had the same parenting.

Ok so this post turned into a bit of a rant and rave.  I have nobody to talk to.  So if you've read it all, what do you think?  Does it sound like autism?  And is it possible to get a diagnosis at 2-3 years old?  Because i'm at the end of my tether and I really need support.  

Parents

  • I first noticed signs in my son between when he was between 1 -1.5 years old. He had words but they weren't your usual first words. It was names of numbers and letters and odd words like toilet (he liked toilets a lot!). He was late pointing and only did it when I taught him hand over hand with books. For a good year after he would only point to things in books and nowhere else. He also had a lot of trouble with transitioning eg he wouldn't get down from his high chair until he was ready even after he's finished eating he would sit there for some time and be upset if we tried to lift him. He also had poor eye contact and his lack of responding had caused us to question his hearing. And he absolutely loved spinning wheels on anything. They were the early signs anyway but obviously as he got older his lack of interaction with other kids was a concern.

    I first saw the paed when he was 2 and they adopted a 'wait and see approach' (whilst heavily implying that me only going to toddler group once a week was the cause despite him having a sibling and an otherwise active social schedule!). We went on the waiting list for speech and by the time he was seen his speech was age appropriate in quantity if slightly unusual in content. Speech referred us to the asd pathway and after many months/observations he was diagnosed at 3.5 years old.

    I do have a friend whose son was diagnosed at 2 though so it can be done.

    Your boy certainly seems to have a lot of traits of asd. What have the professionals said? Have they dismissed your concerns entirely or does he have follow up appointments?

    I don't know about your experience but I felt that health visitors were not the most knowledgeable about asd and tend to reassure rather than act. It was my gp and sen worker at the local childrens centre who were most helpful in terms of referrals etc.

    In terms of support I would have a search and see if there are any support groups in your area - not all require your child to have a diagnosis. Childrens centres tend to have groups on for kids with social communication difficulties and parent support groups. We also go to an asd training session once a week at a childrens centre which is open to parents of all children pre and post diagnosis. If there are any groups like this near you I really recommend going as they are a great source of information about other support that is available locally.

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  • I first noticed signs in my son between when he was between 1 -1.5 years old. He had words but they weren't your usual first words. It was names of numbers and letters and odd words like toilet (he liked toilets a lot!). He was late pointing and only did it when I taught him hand over hand with books. For a good year after he would only point to things in books and nowhere else. He also had a lot of trouble with transitioning eg he wouldn't get down from his high chair until he was ready even after he's finished eating he would sit there for some time and be upset if we tried to lift him. He also had poor eye contact and his lack of responding had caused us to question his hearing. And he absolutely loved spinning wheels on anything. They were the early signs anyway but obviously as he got older his lack of interaction with other kids was a concern.

    I first saw the paed when he was 2 and they adopted a 'wait and see approach' (whilst heavily implying that me only going to toddler group once a week was the cause despite him having a sibling and an otherwise active social schedule!). We went on the waiting list for speech and by the time he was seen his speech was age appropriate in quantity if slightly unusual in content. Speech referred us to the asd pathway and after many months/observations he was diagnosed at 3.5 years old.

    I do have a friend whose son was diagnosed at 2 though so it can be done.

    Your boy certainly seems to have a lot of traits of asd. What have the professionals said? Have they dismissed your concerns entirely or does he have follow up appointments?

    I don't know about your experience but I felt that health visitors were not the most knowledgeable about asd and tend to reassure rather than act. It was my gp and sen worker at the local childrens centre who were most helpful in terms of referrals etc.

    In terms of support I would have a search and see if there are any support groups in your area - not all require your child to have a diagnosis. Childrens centres tend to have groups on for kids with social communication difficulties and parent support groups. We also go to an asd training session once a week at a childrens centre which is open to parents of all children pre and post diagnosis. If there are any groups like this near you I really recommend going as they are a great source of information about other support that is available locally.

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