My son was due to have the Ados assessment back in March which was obviously cancelled due to Covid. He is 5, we have recently had his school report through which is marked “significantly below average” in all categories. I’m really worried he isn’t getting the help he needs, we are currently home schooling and I can see how much he appears to have regressed.
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From reading your comments he just seems a little introverted and private i would not say that you had anything to worry about just yet.
However i know how you feel like because i had concerns over my daughters development at the same age and i also have two children who are autistic but high functioning.
With my boys (with asd) you actually could not tell that they had it untill they were past the toddler stage.
Their development was a bit slower than average but still pretty consistant and really it wasn't untill i started to take them to playgroups and i saw how withdrawn and anti social they were compared to other children that the penny dropped that actually they were noticably different.
So difficulty with socialisation not reading non verbal clues like body language is usually a big indication?
So really i was advised by my health worker when i had my daughter to get her into nursery asap.
Also (and i was lucky enough to do this just before co-vid) she was sent to a little group held once a week (with a group of about 9kids) called chatterpillers.
This was a kind of playgroup with a special emphasis on speech and language and also communication.
It did wonders for her she really opened up after that so if you have any concerns i would suggest to try something like this.
Contact your gp or health visitor or whoever is available and see what is on offer.
I know co-vid isn't helping and has made everything more difficult but we can't let that stop everything and if you have concerns you should still act of them because maybe your son just needs bringing out of his shell a bit like my daughter? As for asd i still think its too early to tell but any and every help he gets with communication including just one to one play with mum and dad (i was told by my health visitor to get educational toys and also building bricks/sets which i did and my daughter loves) helps.
Lots of vocalisation of words (stating the obvious yet it works! yes i did feel a bit daft but you get used to it!) i.e a kind of running commentary on everything you do and he does.
Oh and signing i.e makaton is great so i'm afraid you might have to see a lot of mr tumble
(whatever helps right!) and also the sing and sign dvd with sasha felix is great and is easy and fun.Good luck with everything.
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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.
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.
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.
Yes i completely get your points there.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.
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?
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
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
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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.
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!
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Sorry i was having a bad day but i did not in any way mean to imply anything about you personally?
Yes r.e generalisations i did not mean to tar everyone with the same brush but i've had so many bad experiences that to be honest my sense of trust is very compromised.
Basically this includes social workers telling lies (basically writing on a report that my husband had called my son evil! He didn't i was there when he was interviewed at the time and he was also beeing treated for cancer at the time while i was worried sick caring for him and two little children).
We then made a complaint and my children were given full time nursery places as a gesture of good will (they are lucky we did not sue them but my husband was too ill.
Another time again with inept social workers (its the norm for assesment of needs and also to see if parents need additional support.
Do i invited the man inside my house he felt a bit off to me badically chastising me for being untidy but i let it pass even though he was a bit judgy.
Until yet another report this time it states that i sent my son to school in urine soaked trousers with matted hair.
Edit to add my son has sensory needs and at the time did not like his hair brushed or cut.
When we did he would scream but it was still fairly neat and tidy but naturally very curly.
Well i cried at that meeting (implied child neglect) and the people at the school know me and they were upset on my behalf.
I complained and found out that several others parents had a similar experience.
Another time i had a meeting with a child psychologist who stared at my son and myself as if we were aliens he also was restless used to pace around a lot and sometimes grabbed his crotch to withold urination.
She got exasperated and said with a bit of a sneer does he do that a lot?
This was not out of concern but because she clearly wanted to get through the session and i presume go home.
I made another appointment which i turned up too but she didn't and as requested did not bring my son.
Kept me waiting for two hours tried to make out that she had not made an appointment when evidence showed that she had.
When i tried to follow it up i was told she was on sick leave?
Several very bad experiences on maternity wards as well where after having a c section and finding it difficult to breast feed was laughed at by a maternity nurse for having small breasts you'll never feed him with those little things i was told? Thanks.
Also i was close to the nurses station and groups of them used to have a good old moan about me and my baby.
He was too heavy to pick up he cried a lot i was lazy (first time mum emergancy c section lost a lot of blood hello!)
It was so bad and witchy that finally one of the senior members of staff shouted at them and basically gave them all a stern telling off.
So i was ill struggling spent most of time crying as did my baby great start to motherhood and great introduction to life for him.
No wonder i developed pnd?
Or another time when my son was around 3 and we also had serious concerns about his development when after taking him to the a and e department (he was showing signs of acute distress this is the same son i just mentioned my first born and also as mentioned his dad is sick) so i'm desperate as you would be if your son was lying down on the floor weeing everywhere and screaming?
So i blurt out whats wrong with him? (i fully accept this was not the best choice of words but i was stuck between a rock and a hard place) only to be told well actually whats wrong with you?
In other words your the problem and your the one making your child sick (he was later diagnosed as being aspergers.)
I have seen with my own eyes and through my own experience cruelty bullying gaslighting a failure to be held accountable lying avoidence of responsibility class prejudice and also hostility towards immigrants (my husband in other words).
All rife within every sector i have ever encountered as a parent.
Its shocked me upset me made my life a misery in some very difficult times made me doubt myself knocked my confidence made me cry triggered depression and shown lack of care and dusrespect towards both my husband and my children.
As for trying to get help/diagnosis a bit like trying to get blood out of a stone (thats another story)
I will say it again yes as a generalisation if you will but services that are meant to protect and support children (often vulnerable ones) are shockingly inept in this country have people within them of sadly very low emotional intelligence even if they do have bags of qualifications behind them?
There is a common assumption that if you are of a lower income social class and not smart or goodlooking or articulate enough then you are almost automatically presumed to be guilty and a bad parent?
It should not be like that but i'm afraid that it is if you employ people from a narrow range of backgrounds and basically without much life experience
I know in looking at autism we are looking at peoples brains but we are not all talking heads and the heart matters as does the persons intentions as does love.
As a fellow parent i am not trying to offend you i know how hard it can be to have special need children but why did no one have that same kind of consideration about me or my family?
Edit to add well some of them did eventually but i had to get to the point of near collapse/breakdown first.
So thats my point why leave it to the point that it becomes an emergancy?
I needed help as did my kids and we were literally pushed from pillar to post (literally at one point we all had to leave in case my husband got depiorted thanks tony blair for kicking out a father of one and a pregnant woman we got back but only after a lot of stress and appeals).
I think that you will appreciate that this country that is my birthplace does not feel home to me my children were not helped yntill we forced them (because the ss lied) we never felt welcomed (go back home) my husband was frequently told) we have all been in various ways dismissed patronised and demonised.
So actually if you want to know the truth i have precious little respect left for so called authority figures (who i used to trust) because i have seen their dark side.
They say smile and the world smiles with you cry and you cry alone i would ammend that to add that when you are down and struggling and feel like tit you also get treated like tit in return and yes even by people that should know better like doctors for example.
So i reiterate my point again all the smooth talking and saying the right thing and acting so superior and confident and yes having that much respected intellectual ability or technical knowledge does not matter that much.
When you offend or upset a cancer patient or traumatise a young mum who just wants what is best for her kids.
If you work within the system yourself you must have seen how insensitive and dehumanising it can be?
Yes there are some who are valiant and vigilant and work so hard (almost over compensate) to help and yes even to heal but i have to say they are a minority and they have to fight an uphill battle every day just to try and do rheir jobs and surely that cannot ve right?
edit to add sorry for the typos and spelling mistakes i did not proof read as my post brought back some painful memories for me.
Also i'm sorry to rant but what i have written is the tip of an iceberg and i actually felt as a parent that actually why not tell it like it is?
Its been hell i tried to keep it as short as i could but people need to know that these kind of humiliating expwriences are unfortunately quite commonplace.
Sad to say but i'm sure there are plenty of others who for one way or another found themselves in a vulnerable position and who did not get either the care or compassion they deserved?
We all need to call this out i felt at the time i should have done more but i also felt taken by advantage and it hurt?
Why should we have to fight to (echo of survival of the fittest) get help or support for our children?
What kind of message does that send out to kids that life is a never ending battle?
Its wrong in my opinion and should not be justified?
Also people who are paid to help should do exactly that being the parent of autistic kids is hard enough why make it harder?
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It sounds like you’ve had a really hard time and awful experience with lots of different professionals, I’m really sorry to hear that. I hope your husband is well now and your wee one is doing better. I think a lot of the time it’s not that the individual professionals lack empathy or emotional intelligence it’s that the services in this country have been so poorly funded for so long that they are a shambles. Staff are mostly (though not always I definitely agree you get bad eggs like anywhere) so completely demoralised bu the budget cuts, work load, ridiculous policy/target pressures from management that the only way to survive yourself is to detach yourself from it if that makes sense. I’ve seen really good professionals just “give up” and that’s not right. I definitely think instead of blaming professionals (I don’t mean you I mean society in general often blames the front line staff they can see) we all need to look at how we hold governments and NHS management to account - think about who you vote for, what they stand for, and make your voice heard as parents because honestly, they do not give a tit what the people working on the ground tell them
It’s very disheartening! Anyway, I hope things are looking better for your family now, and you don’t encounter people like that again!
I’m not sure where in the country you are but it would be worth going back to SaLT if they were the ones who referred him for ADOS and also asking the school or involve an Educational Psychologist so he’s getting the right support to access the curriculum at school. It’s been such a difficult year for kids, I really feel for them!
Hey I need some advice from someone who’s also autistic, I recently got diagnosed autistic in July, and from January to May I was off work sick due to burnout, I was exhausted as my anxiety got worse and worse. I came back to work feeling ready even before diagnosis as I just felt ready to do more so I knew I was ready, they helped me massively with changing my shifts anything I could suggest. Due to a holiday gone wrong in July it’s triggered my anxiety massively again, I’m basically back to how I was January, speaking to my close ones they think I need more time off again, I just wanted to hear from other people who understand, if this is normal as I just never hear of autistic’s going on the sick from social media I follow neurodivergent people, and some validation it’s okay to have time off again
I haven’t had any support yet with my diagnosis so my family feels I’m just stuck and no wonder my anxiety has caused me to burn out… I just worry I’m letting my job down (context it’s a part time job) and want some validation really that in doing right thing
I haven’t had any support yet with my diagnosis so my family feels I’m just stuck and no wonder my anxiety has caused me to burn out… I just worry I’m letting my job down (context it’s a part time job) and want some validation really that in doing right thing