Autism concerns

[BettyCrocker]

Your little one sounds like a very typical 18 month old. I don’t think there’s anything concerning there at all, from what you’ve told us. See what happens at the appointment and take it from there but I wouldn’t be too concerned

 

[Pajxo]

I’m really sorry if this is triggering for anyone.

My son is 18 months and I’ve had some concerns about his development since he was about 12 months. I noticed a few people on this forum have mentioned their children have ASD so I was hoping some more experienced people could provide their views. I’ve got an appointment with his paediatrician in a couple of weeks so I just wanted to get peoples perspectives, because in the UK everyone adopts a wait and see approach, and I don’t know how much to push for an assessment or the next steps because I don’t want my son to suffer as a result of delayed help but I also don’t want to take up the place of someone who really needs it

My concerns:

- He doesn’t really point to request. He either just gets himself what he wants, or struggles away shouting until I get it for him. He does point sometimes but less than he doesn’t.

- If he wants me to go somewhere with him, the garden for example, he will take my hand and lead me there

- Still very few words. He knows no if he doesn’t want something, says nom nom nom for eating and ta consistently. He babbles all day long though, making every sound possible.

His positives:

- he points to show a lot. Will point at things on the tele if it’s his programme, will point to birds in the sky or in the garden. An example was we made a pumpkin this week and and he was pointing at it and looking at his dad.

- he has a decent understanding of things. If I say handy, he’ll come and give me his hand, can point to the birds in his picture books when I say “where’s the bird?”, my mam has a fish and if you say where’s the fish he’ll run to the tank and point, knows bath time/ tea time and get your coat etc.

- gestures are ok. He’s hit and miss with waving but blows kisses when I say “kisses for mama”, raises his arms to tell me he wants to be picked up, shows, gives, claps.

- loves praise. If he does something good he looks to us and claps and wants us to clap.

- copies what we do, so will wipe up when I wipe up or get his hoover when I get mine. Does the actions to lots of the songs we sing like this little piggy.

- he plays with his toys appropriately. His fine motor skills are brilliant. His current record is stacking 13 blocks, can do the shape sorters, pushes cars, puts a phone to his ear.

- he’s a decent eater, although sometimes we have to distract him to get him to eat, sleeps ok. Doesn’t have huge meltdowns. Has tantrums but can be quickly distracted to something else.

My unsures - I’m not sure whether these would be concerns or not:

- he toe walks sometimes and crosses the fingers on his right hand a lot.

- loves opening and closing things like gates and the fasteners on his high chair/car seat. Like would literally stand and just open and close the gate in the park rather than play in the park.

My main worries are his speech and his lack of pointing to request. Sometimes it just feels as though he struggles to communicate with us.

Hey! My nephew has ASD and to be entirely honest from reading that, your son just sounds like an 18 month old to me.nothing is jumping out as alarming expect for maybe the toe walks and the crossing of the fingers.
The opening and closing of things like gates is totally normal. This is the reason people have to Baby proof their whole houses, babies love to explore and often don’t want the toys available to them, and would much prefer the cupboard under the sink.
Kids develop in different things at different stages. We have two Neices who are 5 and two friends children who are 5. Watching them grow was incredible because where one didn’t walk until they were 2 but spoke quite early, another walked at 11 months but wasn’t speaking words and Sentences until 2 years old. Looking at them all now, they’re all 5 in school and thriving but there were many times there mums compared them to each other and worried.
I hope you don’t mind me commenting as I’m not a mum, but with my nephew diagnosed with asd and so much experience around kids I just thought I would give you my opinion.

a mother knows best and if your gut feeling is telling you something isn’t right then maybe It isn’t but I always say it’s such a growing and new phase stage that I believe when a child is 2 and a half - 3 thats when you can really see communication difficulty’s it’s they are one.

good luck xx

 

[maytoseptember]

This isn't a particularly helpful post at all and is exactly why I had a huge battle on my hands to get the support I needed for my son. I received comments like this and, looking back, they were unnecessary, harmful and a huge stumbling block and as a SaLT you should be. I dread to think of where we would be if I had listened to the claptrap you just posted. No, not all boys are 'late speakers'. Not all girls are either. Any language delay in our children needs to be taken seriously and looked into ASAP.

I agree with this. I can see the SALT’s post was well-intentioned but it’s exactly these kind of “reassuring” comments that prevents parents from pushing for help hard enough.

I know because I was that parent.

SO many people reassured me that my speech delayed son would “wake up one day speaking in perfect sentences”. They told me that boys are “lazy” and typically speak later than girls. They were just trying to be nice and I clung onto that hope for a long time. My son was, however, autistic, and it took 2-3 years of limbo and “is he/isn’t he?” before I realised yes, he’s autistic and accepted it (it took another year to get an official diagnosis ).

These “reassuring” comments only serve to prevent kids getting diagnosed. They also keep people misinformed about how autism can present. It’s hard enough having to deal with stereotypes in the general population (they can’t be autistic, they’re social! They can’t be autistic, they made eye contact!) let alone from professionals who should know better.

 

[LittleMy]

There are a lot of positives in what you’ve said, as other posters have already pointed out it does seem very much like it could be typical toddler development but obviously if you have any concerns as his parent then it really does no harm to reach out for advice. My gut always told me there was something different about my eldest son. He first went on the pathway to diagnosis around 15-18 months. He was diagnosed at 3 and a half and is now 5. My son regressed from saying his first three words to basically nothing. He never responded to his name, rarely looked us in the eye, it was very much as though he was in his own little bubble away from us. He didn’t point at all, only screamed and cried until we figured out what he needed. He didn’t play typically with toys until more recently, preferring to line them up, throw things or play repetitively. He had a hearing assessment first to rule that out, and we had meetings with his paediatrician and speech and language team over the first two years.

The more we learned about autism, the more we came to accept that there was a high probability he would be diagnosed so it didn’t come as much of a shock when he eventually was (it was still hard to hear though). He is 5 now and with lots of input from nursery, ourselves at home and SLT, he has come on leaps. He speaks quite well now and will chat with lots of prompting, obviously still somewhat delayed, but he attends a mainstream primary school now and is doing well. I hope you get answers, but please try not to worry too much. It is harder to tell when they are younger. That’s why children are rarely diagnosed before the age of 3.

 

[Whaaaaat]

I just realised I never gave an update.

We had our appointment with my sons consultant and he said in his experience he didn’t see autism. His view was that he had a speech delay that he believed would resolve itself but he referred us to speech therapy as he said there was quite a long wait list so wanted to get us on that.

He said he would have discharged us if I hadn’t raised autism concerns so he said he would see us again in 4 months for another review as he will be 2 then so we should have a more clear picture.

But he said while he was interacting with my son he gave excellent eye contact, pointed to things when asked, waved bye bye and he felt he had good receptive language. He did the MChat while we were there and my son scored a 0 which he said was a good indication it’s not autism.

Since then he has come on quite a lot. He has approximately 15-20 words now and seems to be like a sponge at the minute learning new things every day.

So I’m hoping that it was just a speech delay but I guess it’s just a wait and see long term. Either way he’s a delight and I wouldn’t change him for the world.

Thanks for all your help.

 

[maytoseptember]

I’ve been in your shoes and yes, my son turned out to be autistic but he’s also brilliant and funny and super clever. I wouldn’t change a thing.

It was a long road to acceptance though. Like you say, the NHS adopts a wait and see approach, but I was kind of fine with that because I was happy to wait and see if his speech and social interactions caught up with his peers. He did catch up a little, with speech especially, but as his ability to communicate improved, he was able to voice his objections to things/rigid thinking etc and then I knew... ah, you’re autistic.

One thing I will say is you hear “early intervention is key” and yet, all these years later, I don’t understand what that phrase means. I have found it impossibly hard to access speech therapy on the NHS. Haven’t been offered anything else and I don’t think my son needs it. So don’t panic about “early intervention” (no intervention will make your child less autistic, if they are indeed autistic) or feel compelled to sign your little one up for tons of therapies. Just concentrate on what you think he needs help with as he grows.

 

[Sailorontheseasea]

In response to above post, I was about to say - even if nothing immediately jumps out at you it might be things that he’s really really good at that are the pointers rather than the lack of positives. I’m almost convinced my 2.5 year old is “high functioning” (hate that phrase but only way I can think to put it right now) ASD, he can label all of the parts of a car (including the bits that I don’t even know the name of), is OBSESSED with trains and washing machines (and not like the “aw he really likes them!” kind), and is so strictly in his routine that anything that breaks it sends him into a spin for a good day or two. He’s terrified of people, takes so long to warm up and “trust” someone and when even when he does he need some more time. His speech and language is fantastic, he understands concepts and context beyond any 2 year old I’ve ever seen (and I’m a nanny so I’ve worked with many 2 yos including one with ASD) and speaks and acts like a near 4/5 year old rather than a 2 year old. He also has a bit of a sensory thing going on too but too long to explain. As you say - something just seems off. He has enlarged fluid spaces in the brain which can be a pointer for autism but I’m not too worried at this point, whatever happens, happens.

I think my biggest thing to say is not to worry. You can’t stop what happens in the future from happening, if he needs extra support and help then it’s great that you’re already on it but don’t let it take over your time with him now at such a precious age - I wish I had as now I will never get my time spent worrying back. Good luck OP xx

 

[NaeDebates]

This isn't a particularly helpful post at all and is exactly why I had a huge battle on my hands to get the support I needed for my son. I received comments like this and, looking back, they were unnecessary, harmful and a huge stumbling block and as a SaLT you should be. I dread to think of where we would be if I had listened to the claptrap you just posted. No, not all boys are 'late speakers'. Not all girls are either. Any language delay in our children needs to be taken seriously and looked into ASAP. Early intervention is key. As you should be aware, DLD affects 2 in 30 children and, those poor souls just slip through the cracks! I am not suggesting that the OPs children has it but more people need to be more aware of it.

I’m really sorry that that was your experience and I of course believe any language delay should be looked at and taken seriously - but my point was that actually based on what the OP said, her son isn’t actually delayed, he’s within a window of what we would call “typical”. I’m well aware of the prevalence of DLD but again, based on what the OP said (which is obviously all I’m basing it on and I did say that in my reply) he wouldn’t be raising any significant concerns about DLD either as he has lots of nice communication skills as described by his Mum. I’m sorry you’ve had such a horrible experience but there’s no need to call what I’ve said, based on a university degree, further study and years of experience “claptrap” purely based off of your singular experience with your child.

Yes i completely get your points there.
Generalisations help up to a point but at the end of the day we are all individuals and actually parents should be empowered to trust their own instincts and not be fobbed off with half truths?
Unfortunately some people who work in the sectors involving children be it schooling social work speech and language or psychology might very well have a good intellectual understanding of things but not always the right degree of empathy themselves!!
I know right? I found this a bit shocking!
Though its becoming a bit of a trend where so much emphasis is put on academic qualifications (for example nursing i found this out on the maternity ward where some other nurses told me in truth their colleagues knew the job but lacked empathy because they lacked practical experience) that not enough professionals in my experience have the requiste understanding of how a parent really feels! (we are not bloody text books!).
Generalisations come from mechanical thinking checklists a reiteration of the usual or expected but what if our children defy all of that? What if they are not so easily classified and what if actually thats a good thing?

You realise that you’re making generalisations about the professionals working with children and that a lot of us are actually both professionals and parents/carers/aunties/sisters of children with additional support needs? I’m both parent and aunty and my niece in particular had a woeful experience with SLT in another part of the country - it’s very much a postcode lottery which is shocking (and also much worse in England from what I’ve heard from colleagues). I wasn’t saying I wouldn’t even see the OPs child - but she posted on an open forum asking for an opinion which I gave - he’s not even 2 yet, so yes, I could be wrong, but he also has lots of cracking skills that are a real positive for him!

 

[Kema]

I would follow it up though as everyone here seems to say he’s a normal toddler. Your account sounds very much like how my son was at his age. I just had a gut feeling something wasn’t right as he would close and open gates and doors all the time. In parks, soft play etc. He was diagnosed with add at the age of 5. Things become more obvious after the age of two but the gates were first indicator xx

I would follow it up though as everyone here seems to say he’s a normal toddler. Your account sounds very much like how my son was at his age. I just had a gut feeling something wasn’t right as he would close and open gates and doors all the time. In parks, soft play etc. He was diagnosed with add at the age of 5. Things become more obvious after the age of two but the gates were first indicator xx

ASD not add

 

[ChloChlo]

Also may I add in my experience from what I noted via my babies and those of relatives and friends is that boys seem to take alot longer to talk than girls.

 

[leon19]

My nephew is autistic so I have some experience and understanding and your boy sounds like a normal toddler in my opinion. He is still young to worry about talking too much yet. My daughter didn't start talking until a few months after turning 2. She said about 2 words and then it just seemed to happened overnight. By 3 she had a wide vocabulary and was talking just aswell as any other kid her age. She is 5 now and not behind developmently at all even though she was a late talker. Its hard not to worry as I was one of them parents too worrying about child's speech but more often than not it resolves itself and everything is fine x

 

[ChloChlo]

Hi, my 12 year old son has autism. He was diagnosed at the very young age of 22 months.

I noticed when he was a baby and there wasn't any "positives" which you have listed.

My son was noticeably very "blank" at that age. It seemed like the lights were on but nobody was home. I have a son two years older so had some reference of developmental milestones and he just seemed to hit every single one very late, or often not at all. He would look at me, but it was through me.

He wasn't very animated or expressive at all, or interactive. Even from a very young baby I had to wake him to feed him, he slept through the night since birth. Too good to be true. He was a sleepy, dreamy baby. He would stare into space. He smiled late, laughed late. When he did it was at inanimate objects or to thin air but not to people. We often joked he "saw faeries".

Weaning was late. He rejected food. It was textures for him.

Toys - he had no interest in at all. Or was really particular with. If he had his way he would swing a door back and forth all day. He liked the repetitive action of it. Toy vehicles he only like putting them on their side and spinning round one of the wheels.

Speech. Very late. He was non verbal. The most he would do to interact with his chosen people would be to guide your hand onto what he wanted. He made very little noise. No babbling, he was stuck on the "a" sound for a very long time.

When he finally did walk, at around 18 months, he did it with inward pointing toes.

 

[Rlaw1978]

I have two children with autism and work with children with autism. Reading what you’ve written, there is nothing I can see for you to be overly concerned about or that points to ASD at this stage. Your child’s young and they change weekly. You could log keeping a log of any concerns daily or weekly, this will help when you see the child pediatrician for assessment.
Another alternative is Portage. They come to your house once a week and assess your child through play. It’s very relaxed and informal, children really enjoy it. & they can offer advice, support and referrals.
I’ve included the link to their website https://www.portage.org.uk/
They will also have local branches , so if you google Portage and your area you’ll get the relevant contact info.

 

[120clemon]

One of my brothers had some features and received early, additional comprehensive kindergarten. He never met diagnostic criteria and he is your average uni student today.

I used to work with kids too so between the two experiences somethings I've taken away are that as several people pointed out that even normal/neurotypical kids exist on a range and will meet certain developmental hallmark at slightly different times. Moreover, your family history might give clues, if there is history of speech delay for example. Being on the spectrum or having autistic characteristics also has a strong genetic component, the engineering side of my family can attest to this though not everyone has an actual diagnosis. From the experience of my brother, his delays were in communication and behaviors and social behavior was ok. He was a bit neuroatypical and was lucky to not be labelled any specific way but benefitted with personalized attention. It hasn't gone to affect him beyond primary school. Autism/autistic traits do exist along a spectrum so it's not always the devastating boogeyman seen in the media.

There are however red flags, significant regression in abilities and in autism lack of expression, poor nonverbal communication not just lack of single gesture but globally, repetitive almost obsessive actions or behaviors like the gate thing someone mentioned etc. You don't seem to identify those features which is reassuring. I agree that you should get a professional opinion. Professionals have the expertise to spot specific behaviors but kids can behave differently in an office vs. home setting.

It's helpful if you continue to jot down specific situations that are of concern to you. Maybe this is just semantics but a lot of commentators keep referring to following one's instincts but then seem to point out many examples of the kids actually demonstrated a lot of hallmarks of autism. So I think identifying specific examples that give you pause can help make the assessment more productive. Like if your kid is sleepy the day of your appointment, they can't really observe his behaviors anyways.

 

[Whaaaaat]

Thanks. Like I say, I’m going to address it with his paediatrician and see what he says. He’s the expert I guess, not me.

Either way he’s the most lovely, funny, kind little man and I absolutely adore him. I just hate the thought of him finding life a little bit harder should it come to that.

 

[LennyBriscoe]

Good to hear you’re seeing the Paediatrician soon, that should hopefully be the turning point so to speak.

My son is almost five and autistic but also has Global Developmental Delay so I don’t know anything else I’m afraid. But I just wanted to post and say to trust your instincts and push for assessments. If you have a good Health Visitor, get her onboard.

I don’t mean to be disrespectful but our experience of SALT has been woeful. It consisted of trying to push us onto a Hanen course and even now my son is at a developmental nursery, they have had next to no involvement even though there have been times last year they could physically see my son. I know that all the SALT in the world won’t bring the words on but we’re going private (more for me not to feel useless as much as anything really).

Good luck to you all, it’s a tough process

 

[Misbehaving]

I agree with this. I can see the SALT’s post was well-intentioned but it’s exactly these kind of “reassuring” comments that prevents parents from pushing for help hard enough.

I know because I was that parent.

SO many people reassured me that my speech delayed son would “wake up one day speaking in perfect sentences”. They told me that boys are “lazy” and typically speak later than girls. They were just trying to be nice and I clung onto that hope for a long time. My son was, however, autistic, and it took 2-3 years of limbo and “is he/isn’t he?” before I realised yes, he’s autistic and accepted it (it took another year to get an official diagnosis ).

These “reassuring” comments only serve to prevent kids getting diagnosed. They also keep people misinformed about how autism can present. It’s hard enough having to deal with stereotypes in the general population (they can’t be autistic, they’re social! They can’t be autistic, they made eye contact!) let alone from professionals who should know better.

Yes i completely get your points there.
Generalisations help up to a point but at the end of the day we are all individuals and actually parents should be empowered to trust their own instincts and not be fobbed off with half truths?
Unfortunately some people who work in the sectors involving children be it schooling social work speech and language or psychology might very well have a good intellectual understanding of things but not always the right degree of empathy themselves!!
I know right? I found this a bit shocking!
Though its becoming a bit of a trend where so much emphasis is put on academic qualifications (for example nursing i found this out on the maternity ward where some other nurses told me in truth their colleagues knew the job but lacked empathy because they lacked practical experience) that not enough professionals in my experience have the requiste understanding of how a parent really feels! (we are not bloody text books!).
Generalisations come from mechanical thinking checklists a reiteration of the usual or expected but what if our children defy all of that? What if they are not so easily classified and what if actually thats a good thing?

 

[Whaaaaat]

Thanks everyone.

I do get the different points of view. I’m still going to watch my son and we have the SALT referral. He’s also got an ENT referral and his review with his paediatrician in 4 months so if I’m still not happy I can push further.

But I do think it’s a balancing act. I imagine the professionals do see a lot of kids where the issues re speech resolve on their own.

Similarly, I don’t want to take up unnecessary therapies from someone who does really need them or put my son through these therapies/appointments if he doesn’t need them.

Right now my concerns are minimal, I feel as though he’s come a long way and I’m happy to see how it progresses for now.

 

[Whaaaaat]

Thank you everyone for your input. We’re quite lucky because he already has a consultant paediatrician that he sees every 6 months (due to issues he had as a baby), so I feel pleased we’re already past the first hurdle of having to see a paediatrician.

I think I’ll bring up my concerns but if he says he’s not worried and we’ll review in 6 months I’ll take that for now and see where he is in 6 months.

I don’t have much experience with kids, I’m the youngest of all my cousins etc so I’m not really sure what to expect at what age. And all my friends kids are girls and all super chatty from being tiny!

 

[SoF]

Have 19yo with autism & moderate intellectual disability . @ 18 mts the only concern I had was speech was delayed relative to older brother & peers .. raised my concerns a lot but didn’t push (I think I was in denial) it is true every child with autism is different. There’s a long list of “behaviours” no one will exhibit them all .. some may have 1-2 etc @ 18mts it’s hard to tell the difference between “normal” & “cause for concern” I would strongly sugg trust your instincts .. looking back I paid no attention @ the time but these behaviours were present & equelly as was pointed out to me any child can have 1,2,3 but what professionals look for is a pattern of behaviours ; my son @18 mts - excessive crying (no tantrums) lining things up .. toys etc ( once lined up abt 20 packs of toilet paper in the supermarket!) poor eye contact (failed hearing test @ 4 months as he didn’t react) didn’t come to me for reassurance if he was upset .. fought me off. Didn’t look up if some one came in the room.. didn’t seem to notice if visitor came to the house.. played alongside his brother rather than with him ie interactively .. so overall there were a couple of obsessions .. lack of interest/curiosity around him .. lack of engagement .. speech delay.. understanding language is well ahead of spoken language .. my first port of call if you have concerns would be a speech & language therapist.. they are well trained to identify potential issues. My best wishes