M-CHAT assessment - any experiences?

[windy2909]

Hi there,

I’ve posted before about my little boy’s speech delay on behaviour /development . Regrettably he is approaching 2.5 and has no words. This is obviously a huge concern for us and we are taking steps to try to help him as much as possible. With his speech delay, comes the concern that he may have autism. I’ve completed the M-chat assessment online and he’s only scored 1 (and this was one we answered truthfully as we weren’t sure if we’d ever noticed him do this thing) - so the assessment indicates low risk.

Apart from the speech delay, the only thing I can say that he does that could be linked to autism is he likes to line things up when he plays (although my understanding is that some children without autism do this whilst playing).

So my question is - has anyone used this assessment tool and had a low risk score for their child but later had a diagnosis of autism for their child?

Any experiences would be gratefully received!

Me possibly. Ds2 scored low at 18 months, we had doubts at age 3/4 but seemed to grow out of them so we left it and he's just asked us to be assessed now at 13. I'm still not sure he'll meet the criteria for the whole triad but he does have a lot of traits. His uncle was diagnosed in his 40s and ds2 is a lot like him.

I used the MCHAT when my ds was 2ish. I found some of the questions tricky to answer but he scored as low risk. He was diagnosed as autistic just before his 4th birthday. For my ds it became much more obvious at 3-4 onwards, though some things were clearer in hindsight. He’s always been verbal and communicative but he stims a lot more now at 7 than he did at 2, for instance.

Speech aside, for us some of the things that were not typical were:

• didn’t like the same types of group activities as other children - rhyme time and toddler groups. He’d always be the one not sitting in the circle and wanting to leave/explore/do his own thing. He was the same with parties and events like christenings and weddings.

• wouldn’t look at the camera for photos from 12 months. This lasted a couple of years and he still looks only briefly often now.

• learned to wave at 9 months, did it for a weekend and then not again until he was two.

• he didn’t do the pretending to be mummy or daddy type play that kids do. Wearing daddy’s shoes and pretending to go to work, that sort of thing.

• dropped almost all the foods he ate after a bout of tonsillitis at 2. He still only eats a handful of things.

• sleep went completely pear shaped aged 4. Always up at 5:30ish he started waking at 4:15, 3:15 and this lasted for months. We have good and bad periods now.

• didn’t always respond to his name. His hearing was tested and was fine.

• repetitive play.

There were probably lots of other little things that I can’t think of right now. Ultimately, although there are lots of different traits that many kids seem to share, autism is about differences in social communication and repetitive behaviour that impact on everyday life.

@openupmyeagereyes and @Porcupineintherough - thank you so much for your replies and for all the details you’ve provided. Very interesting…..I guess it’s fair to say I can’t rule out autism based on a low score in one assessment! I had considered his behaviour may change as he gets older and both your posts indicate that this is very possible.

If your DS isn't speaking, how does he communicate with you?

Does he point to show you something he's seen that he wants to share with you? How does he indicate he's hungry, wants to play with you? Does he bring you things to look at together (eg a book).

The M-chat can be a useful basic tool for parents in that it flags up what you should be looking out for. However, it is just a snap shot. The autism assessment is hours-long and requires very skilled professionals looking at the whole child.

My Ds scored as medium risk I seem to recall. The wheels really fell off for him though when he started school. At home we could manage his environment and his 'quirks'.

My Ds didn't speak a word until he was around 3.5 years so I know how hard it is not to hear your child's voice. It used to break me hearing other children talk at his nursery.

Does your Ds go to nursery? If so, have they raised any concerns about him? Is he having speech and language support? I would also say that the wait for an autism assessment in my area is 2-3 years now so it may be worth trying to get him on the list now. (You can always removed him later on.)

Apologies if this has already been covered off in your previous posts.

@Toomanyminifigs - my son points to show me things that he wants or takes my hand and leads me to show me. Yes, he points out things of interest i.e planes in the sky, windmills, diggers etc. To be honest he doesn’t really indicate he is hungry but he is fed at regular times each day so maybe doesn’t have to? Yes, he loves being read to and brings book after book. He points out things in the books and will point to any object that we ask him to.

I know exactly what you mean about the lack of speech. It is heartbreaking and you just feel so sorry for your DC, don’t you?

My son doesn’t go to nursery. On the days I work he is cared for by family members. We are considering putting him into nursery for some sessions if it can help him at all. He is on the waiting list for speech and language but the list is long. I’ve no idea when he’ll be seen. Again, considering possibly going private to get him help earlier. He’s also on the waiting list for autism assessment, just in case. Thanks for your reply and any advice will be gratefully received!

It sounds like you're much more on the ball than I ever was!

If your family circumstances allow, I would recommend trying to get your DS into nursery for a few sessions a week. A good nursery will be very alert to a DC's development and will raise any concerns - if there are any.
It will also be good to see how your DS interacts with other adults and children.

My Ds went to a SureStart nursery (I'm not sure how many exist any more). They were amazing with him. They had NHS Speech and Language therapists who would come in and assess children the nursery had flagged up. My Ds was fast-tracked for SALT through them. This was several years ago now though so apologies if this info is out of date.

Again, apologies if this has already been covered in another of your threads but I take it you've had your Ds's hearing checked?

My DD 3.5yrs probably has ASD (pending assessment!) and she didn't score much on the m-chat. She's globally delayed also. This is just my experience/story which might help...

She looks at things we point at, she does pretend play and has done since young like feeding her dolly etc (although it would be considered very limited for the age she is at now, less obvious when younger), points, waves, claps, smiles at us, makes eye contact, is interested in other children (although again for age now this is limited, again more obvious now she's 3.5), not particularly bothered by noise, understands simple instructions, eats well, sleeps well, no issues with clothes (she absolutely loves choosing different outfits and accessories!!), no classic/obvious stims like hand flapping/spinning/finger wiggling, loves books and very engaged in the stories.

She does however often ignore her name, her stim from young was rubbing behind her ears which is much less obvious, walked very late but this was actually due to hypermobility, doesn't understand other's emotion, put her fingers in her ears, rigidly organises and lines things up and likes things a certain way, obsessively interested in things like drains, struggles with transitions like tidy up time at toddler groups, delayed speech and language (knows numbers, letters, colours, animals etc but very little functional conversation speech), reverses pronouns, echolalia, pica, can be very much in her own bubble although she interacts a lot with us too.

Going to mainstream pre-school has really helped, so this might be worth trying a couple of mornings a week? Speech delay definitely can be just that though. I found looking at a few different more in depth lists of autism symptoms helpful in identifying that my dd actually does tick many of the boxes.

@Toomanyminifigs - I’m definitely going to look into nurseries, it seems to be something we can do for him just now which may help. I’ve never heard of Surestart, but will have a look into it.

Yes, I had his hearing checked a few months back and they said his hearing was very good. I’d already thought this but had him tested just to rule out hearing as an issue.

Thanks so much for all your comments - they have been really useful!

@Rhubarblin - thank you so much for sharing. That’s interesting that your daughter scored low on the m-chat.

The reason I started this thread was to hear people’s experiences, as I didn’t want to just assume DS doesn’t have autism based on one online assessment. However, I am aware that speech delay does not always equate to autism. I think I just want to be as prepared and as informed as I can be in order to support him best.

For now, I’m going to look into nursery placements, even just a couple of sessions a week to see how he goes. I think it will do him good to mix more with kids his own age.

@windy2909 how are you getting on?

My DD (age 4) has been diagnosed with autism.

@Rhubarblin - hi there 👋. Nice of you to check in!

I am very pleased to say that my little boy is making very good progress and his speech is coming on a treat. I recently looked back at videos from the beginning of the year and can’t believe the difference. Nursery has definitely made a huge difference and I’m grateful for all the comments and advice I received on here.

I hope that your daughter’s diagnosis has been useful to you and you are getting the support you need to support her going forward. How are you feeling about it all?

Hello, really great to hear your update too!

Yes, she is doing well, school (mainstream, Year R) has been great for her speech and social skills and she's making great progress. She's also getting lots of support and speech therapy etc.
I'm really glad to get her diagnosis actually, as I felt very much in limbo.

@Rhubarblin
sorry to respond so late (I actually thought I had responded before). We have a new addition to the family and things have been a bit hectic. Delighted to hear that your daughter is doing well and that she’s getting the support that she needs. It’s been a few months… feel free to update if you have time x

I’m just putting a wee update on here for anybody reading. I hope it also makes its way back to people who posted at the time….I truly appreciate you taking the time to comment and offer advice.

My son will be 4 soon and his speech and social interactions are really good. I am at a stage now where I can’t believe that I was ever worried about him. The best thing we ever did was get him into nursery.

I just wanted to update as I always loved to read one myself …. as I trawled the internet for answers 🙈

Congratulations on your new baby and so glad to hear his speech has improved!

My DD is about to turn 5 now, having done 2 terms in Reception. She's continued to make excellent progress, she's very conversational now. She's reading and writing well, she's on red level books and can write basic sentences like "I go to the park". DD is by no means top of the class but given a year ago she couldn't tell you her name or age, we've come so far. She still does have some rigid behaviours, still chews a lot and does put her hands over her ears, which is all normal within autism.

@Rhubarblin

Thats really great to hear. Sounds like she’s coming on leaps and bounds 😁. You must be so proud of her! X