Anybody's child have HFA?

[pandyandy2]

Hi there.

For many different reasons I think my child (3) has ASD and my husband and I are currently perusing this with the paediatrician, our next appointment is with her in April.

Thing is, to anybody else outside our immediate family, (ie nursery, SALT, friends etc )because my DS is fully stimulated when with them (ie toys, different suroundings etc) and stimulation is something he constantly needs(!), they just don't see the 'different' and 'difficult' behaviours we see as a family inside the home when 'normal life' take place (ie cooking, cleaning, time for my other children etc)

Ie they are not there at bed time when DS needs certain things in their 'correct place' before he will settle.

They don't see him cove his ears to the hoover or hair dryer saying too loud.

They don't see that it CAN take up to 5 times for him to respond to his name and as they don't sign, they don't see that he actually hasn't picked up on many signs because his eye contact is fleeting.

And they don't hear him repeat 'juice' 15 times in the car because he just doesn't understand that i'm driving cannot just produce juice without a tap!

I could go on but you get my point!

Everybody does completely acknowledge (as it's obvious) that my son does have speech and language problems, trouble sharing and taking turns and walks on his toes but as he IS affectionate and LOVES company somehow ASD must be in 'my head.'

To those whose children were diagnosed HFA...

How old was your child when diagnosed?
Did you encounter similar issues and others think you were mad?
Are the multi disciplinary team really that great at spotting subtleties (although to me it's so obvious now?)
And is your child affectionate and enjoys been around others?

Thank you so much in advance xxx

[Jasonandyawegunorts]

Have you had his hearing checked?

[pandyandy2]

I have yes and within normal range x

[shazzarooney99]

I am not sure there is enough here to say he has autism to be honest, your child is 3, there are children that are neurotypical that do walk on theyre toes, same with the noise thing, a lot of children outgrow that, its when they dont outgrow it that it becomes a problem/

[pandyandy2]

I understand that x
And I kno time is going to tell x

It's the fact that I have 2 other children yet find my son developing sooo differently and I've felt like this since he was at least a year x

Just some other things we find as a family

My DS refuses to hold hands (and believe me ive tried) when out of the pushchair and just can't walk. He'll try but after a second forgets and is just off, with no concept of danger whatsoever!!!

He has no concept if danger in general and I have all windows locked as I've found him on the sill before and he's got bk in the bath before when dry and in pyjamas.

He repeats a lot of what he says even if I have responded. Ie 'no like dat mayee no like that mayee no like that mayee' even if I've verbally acknowledged and I've even heard him saying these repeated phrases later ie watching TV 'no like DAT mayee.'

He's been through odd phases like constantly switching lights on and off, getting upset at tiny spillages, hating anything on his hands etc.

Oh goodness it's just a bigger picture for me rather than language impairment.

He's my little enigma xxx

[pandyandy2]

I think that sums it up. If not ASD I do definitely know he is developing 'differently.' X

Just essentially and obviously want others to see this a) so they/(and i) know I'm not mad and b) so that he can access more help above SALT. Ie an OT to come outdoors with us and give me more strategies beyond what I've tried.

Thanks for the replies.

[shazzarooney99]

Has your child had his 2 year check? My son had his at 2 and a half and the health visitor told me he had developmental delay so she reffered us to the peadatrician and salt.

[pandyandy2]

He's 3 and at his 2 year check all I mentioned was his very boisterousness behaviour (as wasn't too concerened then) and no speech. The HV gave me the 'typical boy' line and advised a language drop in.
I went and was advised to wait.
I went bk at 2.5 when he said very little and the words sounded 'strange.' I mentioned his behaviour been so hard then, however nobody indicated the two could be linked.
After an a couple of assessments deeming his speech and understanding delayed/disordered, not using early symbolic play(?), lack of turn taking and need for constant reinforcement of boundaries...he now receives (and has done for 4 months,) outreach provision from an enhanced early years language unit. Who are fab. However...
I have it written down in one of his SALT observations that he doesn't always turn to his name and one of the play therapists 'commented' his eye contact was different from week to week and (even the paed wrote 'patchy' eye contact) however nobody has suggested ASD, that's MY parental concern and what I said to the paed (who advised watch and wait and a further appointment in April.)

I suppose I just feel like I've been saying behaviour and speech for a long time but the focus still seems just speech because other concerns seem subtle.
But as I probably didn't say very well in the original post if nursery/SALT etc lived with my son his differences are not subtle when you add them up.

Xx

[pandyandy2]

It's my intention when we next see the paed to ask for a referral to the child development center. ASD or not, others seeing specific behaviours we get at home or not our family life is so affected I'd like things 'explored'.

Thank you again xx

[DobbinsVeil]

My DS1 was dx with ASD when he was 3.2. Going in to the appointment I was sure it would either be a no ASD or wait and see as his vocabulary and communication had come on masses from the initial referral. He had the ADOS and they picked up on his subtle "isms" - a lot of that is down to the skill of the Therapists' performing the test.

I did find during the run up to dx some friends would take the well-meaning cheer-leader approach "he's fine/you're quiet/you just don't know boys" - I guess as they weren't as close they would have felt uncomfortable agreeing he had difficulties that were here to stay iykwim. In the end I just didn't discuss DS1 with them and no one doubted his dx when he got it to my face anyway
I hope the paediatrician appointment is helpful and you get the referral you need.

[Fairylea]

My little boy is nearly 4 and was diagnosed with asd just around 3. I have an older child and from the off I just knew ds was different, all the signs were there. My dh wasn't so sure as ds was his first child (dd is from my first marriage) and he hadn't been through all the baby / toddler stage to make comparisons. I pushed the GP for a referral to a paediatrician and things went from there.

Our families had both been denying it really and to a certain extent they still do. Perceptions of autism amongst the older community are very different - they tend to think of autism as being completely non verbal at the extremely severe end. They didn't tend to diagnose what we now recognise as higher functioning or mid or even mid to low autism before so to have a child with speech (albeit delayed speech) who isn't sitting in a corner rocking isn't something a lot of the older generation can get their head round! We've had my dhs mum look at us in horror and say "but his speech is good!" (Never mind the fact it's a year behind where it should be and mostly echolalia)!

Just something else to think about - in my area (Norfolk) they don't diagnose the high or low functioning aspect of asd anymore. They just diagnose as "asd". This is because in lots of ways just because a child is high functioning it doesn't make the asd any less debilitating in many ways. A child who like my son is perceived to have good speech for example could be told to stay still at a road and he would reply "yes stay at road" and people would think he had understood and the next second he would be walking into the road and so on. He has very little understanding.

Keep pushing if you feel something needs investigating.

[Youarentkiddingme]

I agree parents are usually right that something is 'off' developmentally. You can usually work out a best fit for your child's difficulties.

I knew DS had ASD from a young age. HV at 2yo said he was hyperactive and happy in his own little world. Yes - but he wasn't engaging in the one around him!

Multi disaplinary teams Ime are very good at picking up the subtle signs. They can then use their observations to form a bigger picture of what's going on.

[NiceCupOfTeaAndASitDown]

I also agree that parents usually have a gut feeling about these things. I certainly did (in fact DS's diagnosis is exactly what I predicted although it did still come as a shock). DS is 5 and was diagnosed a couple of months ago. All my concerns were brushed off by HV, nursery didn't see any of the stuff we saw and IME multidisciplinary was no good at spotting the subtle signs, because he was chatty and could do puzzles/knew his alphabet I was given parenting advice instead. We went private in the end and as soon as we walked out of the door with an ASD diagnosis I was thinking "of course it's blindingly obvious isn't it?!" But DS still masks and manages to look like a typical kid despite his difficulties and differences. Go with your gut and pursue assessment. If you're not happy with the outcome keep pushing. I recently saw my HV for my younger child and they had this brilliant checklist. I mentioned it was a shame I had not had one for DS as I'm sure it would have raised a lot of red flags before age 1 (when we didn't have so many concerns but now it's obvious the signs were there) she apologised and said to me "when parents have concerns about their child they're usually right" Best of luck

[pandyandy2]

Thank you for all of those replies. X

I felt very down yesterday hence the post but I've woken up this morning with an 'I don't care if nursery/anybody else think I'm neurotic. He is my son, I see him the most and I have a background in SEN and have raised 2 other children through the early years. I KNOW his development is different! I'm going 2 persue this for my son and 2 daughters who need more time with me!'

Wow amazing what an early night can do xxx

[NiceCupOfTeaAndASitDown]

Go for it!

[BlackeyedSusan]

nursery did not spot ds's autism either.

at three it is more difficult to spot. I knew ds was autistic right from young, and could see the signs before he was one but with hindsight. because their dad was violent and because he was still in the terrible twos... I put things off for a bit before going to the gp for a referral as other people would not see it. salt did.

ds was waving his coathanger... (later discovered he was being windscreen wipers, when he finally talked about it) major sign.

if you can do a parenting course as this is one of the steps they ofen offer... you can then eliminate the cause as bad parenting. this is their first response often.

[peppajay]

My son is 7 and is currently undergoing diagnosis. I knew there was something different from about a year when we were banned from toddler groups as he used to pull other children's hair. I didn't take him anywhere where there were other children for about a year -then I took the plunge and registered him in a music group and wow there was structure and he flourished so after that we did mini gym and swimming and the structure and routine wad the making of him. He loves school because of the strict routine but can't cope if the routine goes or something unexpected happens. He is very creative and theatrial and often gets in trouble at school for random singing or dancing etc. However my dh believes he is just a naughty boy and it is my fault for not disiplining him-however when he is melting down over something so trivial as the colour of the bus seats no amount of telling g him to behave will work. I parent him in my own and my dh finds it hard to connect with him. My parents were the same until last night when my dad phoned me to say he has just read the curious incident of the dog in the night tine and he has realised the main character is just like my son! Just taken 6 years for them to realise. I think as a parent you know!! Nursery always just thought he was quirky and because school is so routine he doesn't struggle too much but they see his fury if things change!! However if everything stays in routine and as it should be with no changes we can go months without any issues and this is when others think I am just over reacting. At his first 2 paediatrician appointments he was so compliant and good we were laughed out the door but at our appointment this week because she was running late ge couldn't cope and had a huge mletdown in the waiting room!

[pandyandy2]

That's it!

Nursery and salt aren't with me when DS will shout and shout from his bedroom (to get me to come up) just because his covers have ridden up and let a 5cm gap at the bottom of his bed (not exposing his feet or anything)! Or his dressing gown has come very slightly undone, again leaving a tiny gap. He would need ME to fix that, it wouldn't enter his head he could do it.
Xx

[Notgivingin789]

Just to point out, that not all non-verbal children, who are autistic, are not all at the severe end of the spectrum. You also get kids who have appropriate language skills, but some are at the severe end of the spectrum. Lack of speech doesn't determine severity.

[Lesley25]

Lack of speech doesn't determine severity...

That last line really hit me between the eyes. It's absolutely right for my ds. Just nice seeing it put out there.

[pandyandy2]

In general whether or not my son has ASD, I think the majority of society do still have one set idea of autism and its' spectrum and that's both frustrating and sad. And what's even sadder is when some proffesionals even make snap judgements ie one SALT said to me 'I don't think ASD he's played with me nicely here' and we'd been in the office all of 20 mins 15 of which she was talking to me so just 5 mins with my son.

[MissDuke]

Hi Pandy. My dd was showing signs of developing 'differently' from a very early age too. She has always been 'hard work', crying a lot for reasons unknown to me. Like another poster above, she had to be kept away from other children when she was a toddler as she constantly lashed out. Nursery raised concerns however I was not ready to accept there was a problem I took her to the hv who could see no issue, she observed her in the nursery and again was happy with her. I was very smug, silly nursery.....

Anyway, once she started school, things went well initially. By her 2nd year, she had no friends and was clearly struggling with work. School were adamant all was ok. I finally took her to the GP when she was coming 8 who referred her to the community paed. The paed immediately referred her to the ASD assessment clinic, she was assessed the following year and diagnosed with ADHD.

Her paed, OT and teacher were unhappy with this diagnosis. She attended an ADHD nurse who also was unconvinced. Anyway fast forward another couple of years and she was reassessed at the ASD clinic by a different panel who confirmed a diagnosis of ASD. They said they could see it right away but completed the ADOS as per protocol. I am sad it has taken so long to get to this point, she is 11 now.

My advice would be to keep pushing for assessment as your instincts are telling you to do so. I am so sad that I wasted so many years believing dd to be 'naughty' when she couldn't cope with situations.

[AntiquityReRises]

My child is affectionate and absolutely loves other people and other children! Looks great in a nursery setting, looks rather strange when we're in a play area and he thinks other parents are there for him too!

I'm reminded of that programme about so called very naughty kids and the doc presenting goes into one house and is sure the child isn't autistic because she greets him and is doing imaginative play. It was immediately obvious to me because she was just like my ds and I could see she was actually only copying!

ds was diagnosed just before 3 but he did have a mild regression and he has a speech delay.

There are so many subtle things that people can miss. For instance, ds smiled, but he never smiled in response to others, never made facial expressions in response to others. He makes eye contact on his terms and in fact gets sort of distracted/lost in people's eyes if he attempts it while speaking. He used to shout at people if he was annoyed but never at them, always over his shoulder. If he didn't have more typical signs of autism I might not have noticed these and I think your average person even if they work with children wouldn't.

[imip]

I have a dd who was diagnosed recently at the age of 7. I knew something was 'wrong' from the age of 3. She was very wilful. Wouldn't wear a coat, was very fussy about clothes etc etc. she was such hard work. At that time I was pregnant with dc4 with severe HG, vomiting daily up until about 22 weeks. I was absolutely beside myself. She had one good friend at nursery, but no others, and preferred to play by herself otherwise. She loved playing teachers with her older sister. She was a very good talker, started to read on the earlier side. I was worried by what I now know is stimming, she developed her own peculiar language. All things that were written but considered normal in the red book (but great 'evidence' for the future, esp. The bit where I didn't fill out the milestone of babbling but did all others).

I knew nothing about autism, but has she started school, she made a great group of friends, did well academically. She was a total nightmare at home. Was constantly in a rage. Was basically non-verbal all evening after school. I'd pretty much convinced myself of ASD when she was in reception. Lurking on here showed me that she was masking, and helped me to I see all the subtlies and nuances, especially of a young girl with autism.

Told the school my thoughts when she started yr 1. nqT was quick to blame my parenting style. She said she had an autistic new phew, she knew autism and dd was not autistic. At that stage I had 4 Dcs between the age of 1 and 6. I could see her younger sisters developmentally surpassing her. Took my concerns to the GP, he referred me to the CDC (probably on the basis of dyspraxia - she always looked awkward, had a fear of climbing stairs). CDC rejected The referral but comm lead came to see us at school. Said no sign of asd, in fact, she drew amazing triangles for a 6yo. She was just jealous of her new sibling . Makes me furious that I was constantly rejected!!! I had 4 Dcs in 5 years, and I think I'm pretty well-versed in understanding sibling jealousy (and I have 4 siblings myself!).

In our borough we can self refer to an early intervention child psychology service. Comm pead recommended that on the basis of behavioural problems. So I did. Child psych there said she was anxious. Inferred that I was perhaps a little neurotic due to history of infertility and losing my first child. I was perhaps a little insane at this point! I persisted because there was no other avenue. Everyone thought I was neurotic, so I could see they'd reject a private diagnosis. Persisted with this for a year. Everything was going to pot at home, dd ended up self harming at the age of 6. Cutting herself (no blood) with paper clips, knives and a pizza wheel. Eventually referred to CAMHS for family therapy. At our first appointment, the most amazing women said the problem is autism, you need a proper assessment. That women was my saviour - I wasn't mad! Dd could actually be helped! Dd was diagnosed last November. She was almost 7.5. Things are still very tricky, by our clinical psych is good. I'm lucky to be able to say that after reading lots here. She's totally up-to-speed on girls with autism. She is encouraging me to fight battles to get what dd needs with school etc. of course, it'd be great if she could do it all for us, but I know this is as good as it gets with CAMHS.

Sorry this is so long. But I guess the moral is that people will continue to not see autism because they don't understand it. even I really only understand it for dd (ESP the subtler elements). So keep persisting...