To have not believed the autism diagnosis

[mumchkin]

Hello mums, just wanted to share something that I wonder if others might be going through. Long story about an autism misdiagnosis if you’re the TLDR type :) also, I’m in Australia but our systems are similar I think. For about 6 months I thought the disbelief I was feeling was unreasonable, but I guess it’s for others to judge...

After a pretty difficult nurse check up at 3.5 years old we took our little boy to a paediatrician who gave us a very certain and hard (for us) to process diagnosis on our little boy.

He was presenting with a speech delay and she in the space of a few minutes, decided he was autistic. She said a lot of pretty grim things including, and I quote “well, it’s mild, at least he’s not licking the walls... is he ?”

I left teary, shocked and thinking that I must be a bad mother because I’d never attuned that he was at all on the spectrum.

I knew denial in parents is common with this kind of diagnosis so I didn’t want to be “that mother” I suppose. I duly signed him up for private speech pathology (which has been amazing) and “broke” the news to family and friends.

I should say right now, that I have no problem with children who are autistic. You love your child no matter what the label. It was more that it came as such a shock. Neither myself, my husband or anyone close to my son thought it sounded right. My friends with autistic children on the other hand, were incredibly relieved when someone said it.

6 months went by and our funny, outgoing, sociable and yes, quirky little guy started speaking and interacting like a champ.

6 month check up with the paediatrician is due and I decided to go elsewhere. Did a lot of research and went to a different doctor.

We walked in, my boy high-fived him, gave him his “present” (referral envelope) and starts chattering and exploring the room.

He looks at us quizzically and says “why are you here?” then reads the letter, brow clouds over... asks a lot of questions, watched my boy and then turns to us and says “this child is not autistic, not even slightly. I’m amazed anyone said that to you”... explains how speech delay can be mis-diagnosed etc (which I never knew).

The weight that has lifted off me is incredible. Not relief from him not being autistic (we would love him anyway and deal with it) but not feeling like I’m crazy and that my intuition was so wrong. I will never not trust myself again.

At the end, he said “I’m not worried about what this has done to your son, I’m worried about what it might have done to you” - to which I said “it’s been a very hard 6 months” and my goodness, it has. It made me question everything. Thanks for reading!

I once had a healthcare professional voice concern that ds (3 at the time) flapped his hands at his sides.
I assured her it was just something he did when he got excited (he’s grown out of it now) but I can see how an inexperienced parent would’ve worried and rushed to get him tested for autism. Luckily after 4 dc’s I was familiar with all the different little habits and quirks they have and wasn’t concerned about it and I was right not to be.

Also diagnosed in the uk, boy aged 8, it took two years before they, more than one doctor, committed to the diagnosis, since then, traits became more obvious as he know his way is normal now, so he doesn’t try to mask so much

She said a lot of pretty grim things including, and I quote “well, it’s mild, at least he’s not licking the walls... is he ?”

What a glowing example of sensitivity and understanding THAT comment was.

From a practising, qualified paediatrician?

Jesus.
How worrying she's so completely dim.

Now I’ve much more information about autism, but still not a professional, I’m astounded at how ignorant many professionals still are! Sorry I am not dissing the many, many fantastic people working in this area are.

For example in the speech delay. Did she even ask or run through the basic 10 or 20 point ASQ or equivalent to check out her assumption? Did she ask what words your child was saying? Did she perform any diagnostic tests at all?

For example it is often not the delayed speech, but whether the child says Mummy and responds to their own name. If they don’t, it is a red flag, which needs further investigation for autism. Most children who are autistic with speech delay do not say the ‘usual’ first words such as Mummy, they do not point, or use functional language, and many do not respond or understand instructions.

Even I now could get a sense of whether a child was displaying red flags or not from a simple quick conversation about what exactly the delay in speech is. And on the other side, many many of us with children who are autistic are told they do not have any red flags and don’t need any further support and battle for years to get them properly diagnosed! It’s so common now you would think most professionals would have a better idea.

In Wales they are slow to confirm. Parents, grandparents, close family knew something was amiss. He was six before they confirmed his non verbal problem plus a host of other signs meant he was autistic. An earlier diagnosis would have been helpful.

I’m glad for you that you got a better result, unfortunately for my ds who is 19 years old he is still non verbal and has asd with severe learning difficulties and has “ licked the walls” and on occasion the floor and doors, for your ds and yourself your journey through life will be a lot easier I’m sure than ours.

Sorry in the interests of brevity I was probably a little... brief. He is now 4. Both paediatricians spent an hour with him. He has weekly one hour speech pathology sessions and has had them for 6 months. Second paediatrician I think was assessing on his eye contact, interaction, adaptability to the new environment, speech, conversation etc. in Aus a diagnosis is made usually by a paediatrician and speech pathologist, sometimes a child psychologist. You might be right, perhaps he is on the spectrum. But my gut says no, and always has done. That’s what this story is about. Apologies if posted in the wrong place. I guess I just wish I’d read something like this 6 months ago, might have made me trust myself more.

You can get an ADOS assessment done privately I believe or push for this. No matter our ‘observations’ it is the recognized diagnostic tests that are more important.

Eggsandwich I am sorry and feel for you so much. I have two close friends in the same situation. Luckily diagnosed and on the national disability register which means they receive funding. I couldn’t believe how insensitive she was.

An NHS MDT panel (comprising a psychiatrist who did not meet our son - did it off the papers and a SLT who DID meet our son) diagnosed DS with autism when he was 8.

Age 10 we had him reassessed privately (but the entire panel was comprised of practitioners who have NHS practices). The doctors who assessed him spent hours with him. He does have myriad issues but they reversed the autism diagnosis. I appreciate this is not the usual trajectory,

This wouldn't happen in the UK. You don't have some random paediatrician diagnosing ASC after two minutes. Our problem is lack of diagnosis not over diagnosis.

^This

you are seen by specialists in child development. usually it's wait and see, observations in school/nursery, assessments by Salt/OT and finally an Ados. It takes years to get diagnosed. not saying misdiagnosis is impossible but seeing how hard it is to get a dx and how many years the process takes, it's rather unlikely.

It’s really awful that some people have to wait so long, I appreciate each case is different - I have a friend with twins the same age as mine, one has been undergoing assessment for ages but they want to fit grommets and see if that changes anything before they wil diagnose. I don’t know if the speed with which my two were diagnosed was because of severity or what, but I am grateful for it. Both were diagnosed well within six months of referral being made.

It's a very simplistic way of looking at autism. It's a complex phenomenon which can manifest is so many different ways. As a flipside story my DD2 has always been very verbal and socially adept, has coped with school, friendships, conflict and stress. Is she on the spectrum? Oh hell yes. It's taken us a very long time to recognise it though because autism is different in girls and because she copes so well.

Hasty diagnosis and non diagnosis are equally bad.

Actually this is almost exactly what happened to us in the UK, admittedly some years ago.

Referral to audiologist re speech delay, the doctor did the normal testing. He said ‘Theres nothing wrong with his hearing, he’s autistic. Here’s a reading list that might be helpful. Bye’

I have never forgiven that Doctor, this was late on a Friday, with nowhere open to talk to anyone, just me, DH, DS and new born baby, chucked out onto the pavement as the clinic was about to close.

We got a formal (verbal) apology from the Developmental Clinic. I then found three other fairly local children that had had the same happen. Same clinic, same doctor.

I assume he is still an audiologist. He may still be giving out diagnoses of autism after 20 minutes.

I’ve 2 dc with autism
We had 5 different appointments Through camhs with 5 different professionals
For my youngest.it took over 18 months ,2 professionals left mid way so hence 5 ,as the tests had to be re done.
They were assessed in school and out of school ,teachers filled in forms as well.
The professionals then had a meeting and all agreed my son had autism .
My eldest was diagnosed as 4 year old ,he was headbanging on the kitchen floor whenever he could ,so we knew there was a problem,but even so he saw a good number of professionals.
I don’t know ( thankfully) of anyone getting a diagnosis like you described op
In fact I doubt very much you received a diagnosis in writing for you child as I did for mine ,I expect someone expressed a concern,and you took it literally.
AIBU is not really the place for this

Truthfully getting the diagnosis for my dd was the easy part, she flaps and contorts her face and walks on tiptoes when excited, my dd is a selective mute and can't make eye contact, though if you saw her at home you wouldn't know. My dd was 5 when diagnosed after much input from nursery, speech, physio and dr.

Getting her ILP actioned as it should be in school has took 3 years..... and still isn't as it should be

I know that lots of children in the UK have a long wait to get a diagnosis and that is very unfortunate . In most cases I would say the diagnostic process works, only when the NICE guidelines are adhered to BUT it is not true that there are not mis-diagnoses in the UK.

I have met several children recently in one area of the country where I have been doing some work and am astounded that they have been given a diagnosis. Other professionals that have had involved have also agreed- SALT, therapist, school staff etc. They have been given a diagnosis after a chat with a parent in a clinic room for 20 minutes. No info gathered from school. No ADOS or ADI done and no in depth developmental history taken. School staff in these cases were also shocked by the diagnosis. In these cases the children have had speech and language needs or significant trauma and presented completely different in school to what they did in a clinic room. Whilst diagnoses can be very helpful, they are only helpful if they are accurate.

you might change your mind in the future op, at senior school, or during teen years.
you are not painting a fantastic diagnostic scenario.
have an open mind op.

Starintbemorning the reverse happened to us, again happened years ago, DS1 had speech delay, attending speech therapy from 3y/o. Routine hearing test at school age 6 picked up hearing loss due to glue ear. He'd had problems settling at school, had an educational psychologist assess him and the school mentioned Aspergers to us. We then had an appointment with the community paediatrician who told us no, he wasn't autistic at all just deaf due to the glue ear. He told us they were apparently still finding people in institutional homes that had been diagnosed autistic but were actually deaf. We were told that once his hearing was sorted he would be fine, catch up and develop normally. Tbf he did improve drastically when he had grommets but we still had problems all through school with him, he was lazy, unmotivated etc. He dropped out of college and managed to get in the army but then he really struggled with living alone. It was the army who referred him and he was diagnosed as autistic. We found out from this report that the community paediatrician had actually put in his notes that it was a case of wait and see, only no one had told us this. He's since been discharged from the army, it's unlikely he'll be able to live independently without support. I feel awful about it , about how we failed him, about how he struggled all that time when he could have had extra help if only we'd pushed for more assessments but we thought he just needed time to catch up.

I don’t think the system here is anything like Australia, it takes a lot longer to get a diagnosis and often parents are told to wait a year or so incase it’s just a speech delay.

Both my dc have autism, the first took over 2 years to diagnose, the second a year (more severely autistic).

A relative was told her child maybe autistic as he was 3 and not really talking much, he was referred to speech and language and within 6 months he was talking so was not referred to be accessed for ASD.

@dairyfairies apologies - that was insensitive of me. Of course there are some children for whom an early diagnosis is much simpler. I was reflecting on my own child, for whom, even at 5.5 I think it’s still too early to categorically say either way. There are things about him that almost certainly fit, and things that are less certain. At 3.5 it would have been even harder. We have a diagnosis, which does help us understand him; and I believe is probably correct. But it’s not as simple for me as to say ‘oh yes that’s definitely the case’ even though his paediatric team are convinced. Ultimately, the label isn’t so important, what matters is accessing and providing him with what he needs to thrive, and a diagnosis is part of that for him

Not my experience here in Australia either. Two sessions each with both speech pathologist and psychologist, including long interview with both us and teachers. Questionnaire for all of us. Then after that there was a formal review and then diagnosis.

Other child had speech delay and saw pathologist but ASD was never bought up.

Keep an open mind op, as your child grows it may become more obvious that they are on the spectrum. Some kids are great at masking.

paint, no offence take. I have a severely to affected child and an older one (polar opposite of DC1) where we still have question marks re ASD.

she sounds really unprofessional, blunt and tactless, austism akin to windowlickers , he may well have ASD, my very, very high functioning DS does, the first sign was speech delay, after speech therapy, it helped him immensely and he was away.

Not at all like the U.K.

Our process started almost 3 year’s ago and so far we only have a working diagnosis of ASD and adhd.

There is so much more to being diagnosed than spending an hour with a peditrition.

We’ve had fortnightly meetings with our local camhs service, seen educational phycologists, peditritions, speech and language specialists etc and we having reached a full diagnosis yet. In addition to this a ASd coordinator and education phycologist works with our child in school and they have also been been observed in school with camhs.

I find this confusing, no matter where you are in the world that a peditrition can give a full diagnosis in an hour. Then another peditrition over turns this diagnosis also within an hour’s appointment because your child has eye contact.

My child was an early talker, makes eye contact, has great vocabulary and can be very sociable. Delayed speech dosent means someone has ASD but making eye contact and talking dosent mean you don’t have it. Its a very complex issue and needs a full and proper diagnosis from a multi disciplinary team in order to do this.