Autism

[Cantthinkofausernametbh]

I found out my 19 month old toddler is autistic, I always pushed this thought to the back of my mind but knew as he showed a lot of the early indicators. I have a hv coming to give me some more advice but please can you let me know what you did with your autistic child to make life easier for them? Does a change of diet help? Speech therapy? How can I imply speech therapy at home? I feel completely heartbroken I had a very tough time in school whilst I was growing up and had no friends. Knowing my little one could go like this his whole life is horrible. I don’t know where to begin I am willing to do anything to make this easier for him.

I asked HV to visit at 22 months as i suspected my daughter had autism, im a teacher and have done training on signs, she agreed with me but didnt use the word autism, she done her 2 year check early at 24 months and i was given a load of leaflets for autism and 11 months later she was diagnosed at her first pediatrician appointment. When my daughter was 2 i wouldnt say she could have autism i would say she has autism, it was obvious.

At this point I wouldn’t waste worry’s looking too far into the future, nobody can predict what will happen so tackling things as they happen.

Focus on the now and preparing yourself for a long road to getting further investigation and possibly a diagnosis. Ds was referred when he was nearly 5 and we didn’t get the diagnosis until just before he turned 7.

The diagnosis process should be a multi disciplinary process anyway so that should include a speech and language assessment so at that point a decision if he would benefit from SaLT can be made.

What are your specific worries and areas of concern at the moment? If you let us know we may be able to give some ideas of what may work at this point.

Do you have a good support network around you? Make sure you take time to look after yourself

Also when you see your HV ask about the local portage scheme, it maybe that your son would benefit from someone coming to the house regularly to work with him on developing skills.

so the DC does not have an Asd diagnosis then. HV cannot diagnose autism.

Whilst HV are not officially able to diagnose ASD they are experienced and understand what will lead to a diagnosis or not.

completely disagree. HVs were a total let down in out case, blocked referrals to Salt, paed and OT for a year and told me I was an overworried mum. GP put the referral through.

I had a non verbal child with multiple developmental delays who lived in her own world and has no means of communication. I saw various HVs. One as useless as the other.

I would very much caution anyone with ASD concerns to contact the HV. Also go via the GP. My experience is also far from unique in my social circle (with lots of children with ASD).

I think it really depends where u live and who your HV are, mine was really helpful, the GP completely not, wouldnt do anything.

@dairyfairies that is your experience would HVs but it is not by any means the case with all of them. I have not always had great experiences with them but most are good. HV will see a wide range of children and will inevitably have some experience of ASD

I think a useful approach is to think about your child and your child’s differences regardless of the specific pathway or diagnosis.

Autism is a diagnosis which means a number of areas which are different. Every autistic person has a different set of differences and scale of difference with these areas.

Example - child 1 is non-verbal, child 2 is talking in complex sentences before 2. Both autistic. Both could benefit from speech therapy, the wordy one for reciprocal conversation, nuance, etc and the non-verbal one for alternative methods to facilitate communication.

Maybe looking at what you have observed and thinking about which areas the differences fall into would give you a head start on how to support the differences.

An early place on the pathway can be useful but that is because it opens up support and recognition of difference, you can do that anyway.

OP if you, and I know from experience how emotionally difficult this is, can post some examples we can probably give you some specific suggestions.

This is not an autism diagnosis.
My school colleagues suspected DS had it, but they would never ever have said it. I was just encouraged (gently) to explore options... your HV has behaved very very unprofessionally and I would be flagging this up.

OP if you have concerns, look beyond AIBU.

I saw 4 different HVs. Not one. Every single one I saw was as useless as the other.
And I know my experience is very very common in the ASD community.

HVs have, generally speaking, very poor understanding of disordered child development. It's just not something they are trained in. It's usually all a case of, ' oh, they are all different and will do things in their own time'. Only some children don't.

I get that some on here has supportive HVs but from people I know in RL, I know that my experience is far more the norm.

I am all for HV when it comes to weaning advice, anything else - avoid. I wont be going into detail but my HVs put me through hell when I tried to seek help.

Fwiw, I have a child with autism and severe LDs - not even a child with HF ASD. She is at the low end of the spectrum who presented with significant delays when I asked for referrals.

My HV was hopeless as well @dairyfairies so much so that I refused and HV involvement with my daughter. That said the GP wasn't much better either and it was a SALT who referred my son to a paed. The paed's first were "And so your GP practice thinks this is normal? I am really worried how bad it has to be before your GP will refer to a paediatrician.. They write you believe your son has autism, I want to reassure you that I think you are entirely right and a multi disciplinary assessment will confirm this" The same paediatrician later threw the HV out of the multi disciplinary assessment when she rubbished the assessments blaming it on my anxiety and telling them I had fooled them all.

That is not quite true. Some HV will be knowledgeable and sometimes information from the HV will be used in the diagnostic process

More of a generalisation on my part then, but I’m aware of this too. They aren’t qualified to make such a declaration but we weren’t there. What’s for sure is that OP doesn’t have a diagnosis.

DS was diagnosed shortly before his 9th birthday by the Consultant Community Paediatrician. The GP referred us 14 months earlier. By this point we had gone through a QB test which showed a very strong perfectionist pattern, we had evidence from home and school about his strengths and difficulties plus history of his SALT interventions when he was 3-6. Really she should have taken it on to Psychology, but felt that there was sufficient evidence (including her own subtle observations about his following of instructions, way he followed the conversation and ways of deploying eye contact) to bypass that stage and decided that she had sufficient evidence to diagnose herself.

I first raised concerns about his lack of progression with speech when he was 2.5, but he wasn't far enough behind to refer then. He struggled to adapt to the birth of his brother. He was a bastard to get dressed (that would be his sensory issues, that he just couldn't express until he was older. He had an unusually long attention span. We veered from one tantrum to another and another. There were certainly signs when he was a toddler, but there was a lot of scope to mature out of them if if it wasn't ASD. An experienced HV may well recognise when they are seeing ASD, but they do not have the remit to formally diagnose and need to refer on through the appropriate pathways which can easily take over a year.

Autism is very personal. I know of at least 4 children with it in DS's school and there could potentially be more high functioning, undiagnosed children like DS was (and because he is so good at socially studying people and masking, school would never have identified it at this stage). There are some children who have transferred to our small, cosy school and need a 1:1 and modified curriculum to support them. Each child, like the NT children has individual needs.

DS needs down time, and warnings about transitions. He is very sensory about clothes, style, cut and fabric. He always struggled with the supermarket (which was awkward as his multiple food allergies meant I had to shop in 4 different ones when he was a toddler) He coped with the relaxed pace of nursery, but struggled with the increased structure of school and busyness of wrap around care; if I had to RTW, a child minder would be a better setting. He's been fortunate with the lovely children in his class and has good friends, but can struggle with unstructured socialising in a bigger group. He was well into school before he genuinely played with other children rather than alongside. He has got "easier" and happier as he's been able to express himself more. Parenting him is a blend of helping him be himself and helping him function in the world. Each child is different and has their own challenges and strengths. I love the person that DS is, but hate the frustration and anxiety that stem from the autism, that he could stay who he is, but just find life less of an exhausting effort.

I didn’t read your previous post so I don’t know what your concerns are. Just be aware that there is a wide spectrum of ‘normal development’ for NT children too. At 19 months you may see some ASD-like behaviours but they may disappear over time. I think sometimes people can be a bit quick to identify anything that is slightly different as a red flag.

My eldest is on the spectrum. Wasn't diagnosed until he was 12. My youngest is 3 and sees a speech therapist. She asked if I want my youngest to be assessed. She said she wouldn't judge me either way. We agreed but it will probably take 2 years.

Recently received a diagnosis, the pediatrician I saw said a couple of times that the usual window is 6-7 years at the earliest.

@Cookit

My LO sounds similar too!!

My baby literally hardly ever smiles. If he does it's usually at something random and he only laughs if my sister in law is tickling him. Does no social smiling definitely mean he is autistic? Or is it just a high chance?

@Bpr187 my son isn’t autistic. He was just a difficult baby. He’s very social now.

@Dinosaurampus @Osirus

Hi guys! I'm having some concerns about my 6 month old and have googled certain things which have flagged up autism (something I've never thought about until now as it doesn't run in my family or anything). My DS has never been the happiest baby he is very grumpy but he use to smile more than he does now. He first smiled when he was around 7/8 weeks but I was seeing less smiles from around 4.5 months to now. He will laugh when we tickle him etc but most of the time he just stares at me blankly and doesn't smile back at me.

What signs were obvious to you before 1 years old? I am so worried :(

My son was autistic traits at 20months and diagnosed at 2. But it was clear that even without a ASD diagnosis he had learning difficulties. His first appointment with speech therapist lasted 5 minutes before she called the paediatrician if she could pop in (same building). It’s more common in classic autism.

At 6 months it’s very early and even if it was there would be little difference in how you would treat. I knew something was not right at one, I got a pushchair that faced me for as much interaction as possible. Other than that I treated my child in the exact same way as my other children. Worrying now will only make you stressful that your child may pick up on.