HV and EYW have said it is likely that my daughter (17 months) will be diagnosed with autism at some point.

[sha160528]

Hi,

Not really an AIBU - posting here for traffic.

I had concerns around my daughter’s lack of pointing and although she does do other gestures they’re often not in context or she doesn’t do them often.

Long story short, the HV and Early Years Worker came over today to do a questionnaire with DD and observe her and apart from the fact that she maintained eye contact and smiled, she was classed as ‘aytpical’ on most other areas (imitation/pretend play such as feeding the doll, pointing at a teddy she brought over, responding to her name etc)

She does respond to her name sometimes, she does also feed the dolly milk sometimes but she didn’t do any of this on the visit and I did mention that sometimes she does do the above - the HV said you would expect her to respond her name when called a few times during the session and that she should naturally engage in pretend play if she was ‘typical’.

We’ve met the criteria to be referred for SALT although there may be a wait.
What happens next?

She Did say it it could mean DD does all of the above a week or so later and isn’t autistic but judging by the above she is likely to be diagnosed at some point (her dad is autistic)

I just feel like I don’t know what’s next? Yes they mentioned the SALT but I’m not sure what it will mean for DD or if I should keep an open mind as she’s still young or if I should accept and start interventions for an autism diagnosis?

Before people think I’m rushing a diagnosis - I know she’s still young but her dad and my sister have autism and got diagnosed during adulthood so I made sure to voice my concerns to professionals as I want early intervention for DD if she is autistic (or even if she just needs extra support).

It's seems quite early but given the family history I can see why they might be more confident in boxing a potential future diagnosis. I know with my friend's son he was diagnosed at two but other than SALT, interventions were limited until he was a little bit older

My sister's a paediatrician and she said regarding my suspected-autistic 2.5 year old: "Assume she's autistic and get any and all interventions you possibly can, because if she's not autistic, they won't have done her any harm."

Have a look at what your local council offer and see if you can be referred to anything by your GP or Health Visitor- we go to a lovely group which we were referred to by my daughter's physiotherapist.

I think it’s really inappropriate for the HW and EYV to say that. First of all autism cannot be diagnosed before 2 and your DD is wayyyy short of that. Second of all they are not qualified to determine that she will be diagnosed with autism based on an ask questionnaire and some brief observation.

If they want to advise referral for an assessment fair enough. Beyond that they have massively overstepped.

Yes I agree with PP, accept any help now, it can be a nightmare and a lengthy process getting help later down the line. It can’t do any harm

It sounds like the HV did some version of the MCHAT screening which is used to refer children for intervention and further testing for ASD. It isn't diagnostic. I'm not sure the HV can say diagnosis is likely from what you've written, but as your daughter is showing some early markers in common with children who are diagnosed, SLT referral and further monitoring are a good step. You're not unreasonable for asking for intervention now; my DS has ASD (DH too) and I had strong suspicions from about 2.

Did they also refer your daughter for a hearing test? They should do this, even if she passed the newborn screening and even if she seems to hear. There is a lot of overlap between the presentation of hearing issues and ASD in young toddlers.

The interventions she would have now are not autism specific; they are the same as for any child with social communication delays. It's very positive that she displays some pretend play and engagement with you, and the interventions will build on this. They are likely to be parent led at first - showing you how to play games that get and keep her attention and encourage imitation.

I think you should just work on thr basis your daughter appears to have some social and communication difficulties at this point and just take whatever (if any) support there is.

I know how overwhelming it can feel. My daughter went on thr pathway at 5 and it took 3 years to diagnosis..so I do think early intervention is helpful

It's certainly possible that your daughter may be diagnosed with autism, given your family history. I would be open to any and all support that is offered by SALT or other professionals. Give her lots of opportunities to mix with her peers and when you play with her, concentrate on social/imaginative play with little dollies or animal figures. Take it one day at a time and try not to worry - she's still very little and at this stage she may just be a little delayed in some areas.

My son was diagnosed at 2 (nearly 3) by the NHS. If you can find one go on a hanen more than words course. Also the early bird course for kids diagnosed pre-5 was good. We had salt but a lot of it was based on hanen.
Portage play specialists and SEN toddler groups are helpful places to pick up tips. Don't wait for diagnosis as it may take ages and changes little.
Main thing is interact and have fun as much as possible. Get her responding because it's fun. Get sensory toys that interest her but that require some input from you (even just to give it to her). Make yourself the most fun person in the room. Enjoy her, don't think for one minute that just because she finds something hard now that it will stay that way. She will take developmental leaps and surprise you. Best of luck.

i first took my son to the HV at 14 months. I knew something was different . Assessments started at 19 months and he was diagnosed before his 3rd birthday.

My son was fortunate to start an intensive home therapy program aged 3 as part of a research project. I’d say go with what they say and take any support they offer. If it turns out they’re wrong then all good. To say my daughter was very late with all milestones, every single one. She was referred to SALT at 2 1/2 as she was completely silent and given my son’s diagnosis they took me seriously. She also saw a paediatrician . She’s 19 now and not autistic. She eventually started talking at 3 1/2 but still had a lot of key sounds missing when she started reception. Everything else she caught up in eventually.

Thank you everyone.

One thing I worry about is the way she’ll be treated throughout life. How will she make friends? Will she be bullied? Will here career options be limited? Will people try to take advantage of her etc.

I guess I need some support myself to manage the anxiety related to a potential diagnosis and DD’s future. I don’t have anything against anyone that’s autistic (obviously … given that my husband is) but I do worry about future outcomes as two of the autistic people closest to me did get bullied/shut down in school/missed career opportunities due to discrimination and a lack of support etc.

How has it been for you guys in that regards with your DC?

So my son is now 9. He is Neurotypical and does well at school, BUT he has never really done pretend play, he has never really made toys do actions in that way. He also did not always respond to his name, had speech issues and didn’t play with other children much. More observed from the sidelines.
turns out he had a hearing problem; which was surgically corrected and he is now fine.
totally understand your concern given family history but there could be more than one reason.

My DGS was suspected to be on the spectrum as he had speech delay. He’s 7 now and can do complex maths in his head and can correctly read various hard words. He’s probably on a spectrum somewhere but I wouldn’t be too concerned this early