My heart torn out - told 3 year old (suspected ASD) has a low IQ

[sterlingb]

I find myself teetering on the edge of devastation and wanting to tell all of her medical team to go F* themselves, after having been told during a meeting with one of my daughter's therapists and her psychologist.

A bit of backstory (we are expats living in Germany, so dealing with a whole different medical system) - my daughter just turned 3 in April and has had considerable delays to her global development. She only started walking in January (3 months shy of her 3rd birthday) and has speech/communication/social delays. She has always been a loving, affectionate toddler with no behavioural issues. She has been in physical and occupational therapy since she was 4 months old, and recently her therapist began talking about suspected ASD. This was something we have struggled to come to agreement on with her healthcare team, as she doesn't exhibit any behavioural challenges or struggle with changes to routine, and felt she was more likely to have some sort of communication disorder.

During today's meeting, we were told by the two therapists (one of which had spent a few hours observing her at her daycare) they do still suspect autism AND they went further to suggest her IQ was likely at the lower end (somewhere below 70). I was fairly blindsided by the later point and I took this pretty hard, as it brings up even more worries about what her future might hold. However, I'm also upset that the suggestion on the IQ wasn't based on any sort of testing, just general observation.

At the moment, my daughter has limited speech and mostly repeats words - however she can count to 10, say the days of the week, put together wooden puzzles, loves to pretend to read books, does pretend play with her stuffed animals etc. My husband is quick to dismiss their assumptions and say that it's too early to know where exactly her IQ lands and they are basing their assumptions on data which puts a subset of those diagnosed with ASD at having an IQ below 70.

I just don't know how much weight to put into their assessment at this point. I don't want this to influence the way I think about my daughter. I'm now scared of either limiting her full potential by being overprotective or pushing too hard without realising something's not within her capabilities. I guess I'm hoping someone here has been in a similar boat!

Hi, that must have been really hard to hear but I wouldn't pay too much attention. IQ isn't shown to be a particularly helpful measurement of intelligence anyway. Your DD sounds bright with the counting, days of the week (mine doesn't know days!) etc. It's very unlikely you would have got a comment like that from the developmental paediatrician in the UK.

The echolalia is actually good as it helps them to learn to communicate socially.

My daughter is similar, walked just before three as well and delayed in every area, main issues are communication and social skills at this point. Also being assessed for ASD but has grown out of many of her autistic traits. She is 4 (turned 4 in April) and her communication has really come on since turning 4. She was always good with counting&reading the numbers, shapes, letters etc before proper communication, which is something you do hear a lot of parents say where the child has been diagnosed with ASD though. We can have mini conversations now.

I would try not to worry too much. 3 is still so little.

My 8 year old at 3, was on another planet. No interaction whatsoever, just spinning car wheels all day, babbling in his own language, repetitively running up and down the house. He didn’t understand a single word said to him. He was locked inside his own world.

He has a diagnosis of moderate autism, (back when he was 3 he was as diagnosed as severe due to his then presentation) he also has adhd and a moderate learning disability.

He’s able to hold small conversations now, if I gave him a key to a car I’m almost certain he could drive it, in an unsafe deliberately mowing everyone down fashion he knows all the controls, what they do, when you need to change gear, he knows you need to put the clutch down to change gear, he knows by the sound of the engine it’s time to change, he knows and observes all speed limits and watches your Speedo and if you go 1 or 2 over you get read the riot act etc, he knows the directions to places, observes road signs, it’s bizarre. I started to learn to drive as an adult and never knew any of that!

He can read well and writes a bit, he can communicate all of his wants and needs.

He goes to a specialist school and he’s the most able in his class. We have so many challenges but he’s a million miles away from where he was at 3.

I honestly can’t predict ds future (my brain doesn’t allow for some reason) but I know it’s not as awful as I imagined when he was 3. x

Oh and sorry, I meant to add.

your dd sounds like she’s doing fab. My ds didn’t know any of that at 3.

Thank you so much for these replies. You have no idea how much it means just to hear from mums who have gone through this and come out the other side!

During this meeting, I kept reminding myself that none of this changes who the little girl I'm going home to is. Why is it so easy to hear something like that, and then suddenly imagine you have a different child all together?! I guess the greatest fear of any parent is to lose a child, and somehow any sort of diagnosis triggers those fears.

Having time to reflect on the meeting, I do feel like it was irresponsible of these two to give such a negative outlook at this young of an age. I'm finding the autism diagnosis in general difficult to assess, as it doesn't QUITE fit her. But then I keep hearing how girls are different than boys, so I sort of throw my hands up because what does that really mean then?

All her caregivers (grandparents, child minders her kindergarten - essentially all the people who spend the most time with her) think it's a load of rubbish and disagree with the assessment. I've already seen huge improvement in her language since she began walking, and she mostly gives us 2-word and sometimes even 3-word sentences. Of course, it's super limited (Where is this, what is that) and also a strange mixture of German and English (as she's raised in a bi-lingual household), but I have complete faith we will get to the point of having mini conversations around 4!

Hi sterlingb! I hope you're daughter has made strides- she sounds like a delight and no one should be able to take this away from you with their off handed remarks. I hope you can look back and see how much she has improved since- my heart goes out to you and thank you so much everyone else who replied. the encouragement means a lot for people like me who are just struggling and worrying- at the start of a long road ahead that seems utterly dark and miserable.

I'm not sure they will
Be able to assess IQ at this young age.

My daughter's ASD assessment was devastating as the report referred to her
"Extremely low" cognitive proficiency
This is the combined score of her working memory and processing speed. 2nd centile - below 98% of people. And a low IQ . I was extremely fearful about what this meant for her future.

It was explained to me by her dyslexia assessor that IQ is tests are done on speed, so whilst her IQ is low, if she is given more time (and she would qualify for 25% extra time in exams), then her adjusted IQ would be more normal.

I really hope OP that this is what they mean - it's encouraging that she has a vocabulary, knows days of the week etc..

@sterlingb

Your words - Why is it so easy to hear something like that, and then suddenly imagine you have a different child all together?! Resonated

Your daughter is counting, playing, making short sentences. She is communicating with you, it may be delayed but she is getting there.

I agree these comments were irresponsible without context. You're fearing a future without having it explained to you.

My daughter processes slowly and has a low working memory - so forgets things half way through, but is learning to accommodate this.

My daughter has ASD but does not struggle with change in daily routine - so it's possible.

It is possible to assess for ASD at 3, so hopefully you don't have to wait for too long to find out.

I'm fairly sure my DS would have been labelled as low IQ when he was 3. It's very difficult to tell at such an age. Particularly when speech and language is delayed. ASD kids may present as withdrawn, delayed etc but can often have a lot going by on under the surface. My DS's reading ability outstripped his ability to form spoken sentences for a long time. We realised when he was about five that he could sight read when he started confidently reeling off the destinations of trains at the station....

Encourage your child's interests and see where it takes you....

My DD was born deaf and had various special needs. Her ‘top’ speech therapist told me that she would always struggle in school and be bottom of the class. She was top by the age of 9, got a scholarship to a top school at 11 and is on track to get top GCSE grades.

Dont let them write her off. Get her all the support you can. Nobody knows at this stage how things will turn out x

Hi all,

Many thanks to all for the recent flurry of responses! Reminding myself of those dark early days is a difficult one. As I am sure most of you know, with time we come to accept the challenges that come with SN children and learn to take things as they come.

I’ve gone through the lot of those feelings - grief, denial, loss. I’m sure where we stand now at 5 years old is somewhere within the range of my biggest early-day fears. She didn’t ‘catch-up’ to her peers like I had prayed and hoped. We got an official ASD diagnosis in April and will do a non-verbal IQ test next year at 6. She is noticeably different and every day tasks (like shopping, getting dressed, crossing a street) can be a struggle. I don’t get to share in those mother/daughter moments like I always imagined.

BUT, it hurts SO much less than it did then. the achievements she makes feel just as good, even though they come so late. We FINALLY (mostly!) mastered potty training a few months back. Her communication continues to progress and she recently verbally told us the things she had done that day (first time). She’s in a great integrated kindergarten with amazing support and whole-heartedly accepted by the other kids in her group. We also have a new psychologist who has a better bedside manner and more positive general outlook on things.

I’ve changed a lot of the journey to where we are now, but I guess some of that can be chalked-up to motherhood alone. I don’t known if it’s all been good change - I am definitely more stressed, less relaxed and have a more uncertain outlook on the future. But none-the-less, my heart doesn’t break anymore for where we are at.

Big hugs to you. My 10 year old has a pared appointment aged about 4 where he said he thought GDD but no autism. He was diagnosed 2 years later with Aspergers syndrome and no learning disabilities.