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!

Both our sons had speech delays. The first thing that everyone suggested that we should get them tested for was autism 🙄. Neither are autistic.

The autism diagnosis process in the UK is not at all similar to what you describe.

Thank you for sharing, and a great story about trusting your intuition.

Did you know there is a board on Talk where people are often posting about autism diagnoses in children?

www.mumsnet.com/Talk/special_needs

Just think it might get good responses/replies/traction there, as "AIBU" really is a board where a dilemna or question is posed.

The paed sounds incompetent to me.

The diagnosis process for autism is long and complicated and requires input and testing from various different agencies. Various health professionals told me that ds had autistic traits but it was not a diagnosis at that point.

However I would also question the second paed being able to say that a child is not autistic just like that. It's a spectrum and some don't present in the "usual manner"

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.

What exactly are you asking whether YABU or YANBU?

I’m glad you’re feeling better, and your son’s getting on so well.

Realistically, it’s not possible to make a satisfactory diagnosis of autism in a single session. NICE guidance says it needs to be a multi professional assessment (ie assessed and discussed between a mix of psychologists, doctors, speech therapists etc), and to include observation of the child in school or nursery, or at least information from their teachers. The work involved takes a couple of appointments and some phone calls at the very least, even for straightforward cases.

Honestly it doesn’t sound like your son has had a thorough autism assessment from ether doctor, you can’t be sure a child isn’t autistic just from a brief observation. But if his issues have resolved and you have no concerns then that’s a happy ending all round 🙂

My sons are both autistic (well youngest is under assessment but he is)

Eldest has, and always had advanced speech. Youngest spoke briefly and regressed to non speech. So no speech delay is definately not a diagnostic criteria but regression most certainly is.

Also as for the Dr saying at least he’s not licking walls - the dr is a bell end and frankly shouldn’t be allowed near vulnerable people. Sorry you’ve had to go through this

My child is just as described - chatty, social, made eye contact, engaged in imaginary ply - and a GP similarly dismissed my husband when he suggested autism and asked for a referral.

My child has autism. My child also masks incredibly well. And when a truly qualified paediatrician chatted with us years later, she was also observing our child the entire time. And then explained to us just what our child did and how she was masking and mimicking and why that was a sign she could have autism. Once she said it, we could see it too. Others doctors didn’t spot it.

I was told in first appointments with both of my children they were autistic but actual diagnosis took much longer (but was confirmed for both with cdac assessments). I’m guessing the op here was told similar and their child put on the pathway rather than actually diagnosed 6 months ago? How old is your child now? I don’t actually think either paed is correct in saying one way or the other without assessments but if as a parent you have no concerns now the speech has caught up then it’s unlikely it is autism

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. In the UK the paretns would be asked to fill in a lengthy questionnaire along with any other professionals eg school/nursery that is involved with the child. You would then go for an initial assessment where the child would be observed along with the questionnaires scrutinised. An ed psych may carry out an ADOS assessment along with other cognitive and processing testing. This takes at least 30-60 minutes. It's much harder to diagnose a young child.

I'm glad that you and your ds have found a good solution, and that his speech issues are being resolved but I wouldn't want readers in the UK to think this is a 'normal' diagnosis pathway!

The autism diagnosis we worked through in the UK comprised three different appointments with specialists - two of over an hour, and another which was nearer 2 hours with three different psychologists with autism specialialisation in the room at the time. Plus written reports from the school SENCO, multiple teachers; plus reports from his GP; and detailed questionnaires for both ds and us as parents, including full reference to his development from pregnancy onwards. And that was with a highly verbal teen. I'm amazed you had a diagnosis after one appointment with a (generalist?) paed, especially with a young, non-verbal child. And then that another (generalist?) paed would 'undiagnose' him in minutes - it all seems a little odd, and certainly not what I'd expect to see in the UK system tbh...

I do think there is a danger of leaping to autism as a solution sometimes, but certainly in the Uk I don't think the sort of misdiagnosis you've experienced would be feasible.

It took us almost 9 years to get a diagnosis here in the UK.

You don't just walk into a room to be told that they are/aren't on the basis of 1 visit because Autism presents differently in everyone.

My son is physically and intellectually the same/slightly higher than average within his peers but his social and emotional skills and abilities are way below what you'd expect. This is why it took so long for him to get an official diagnosis.

I wouldn't trust either paediatrician in your case as they both sound like they've compartmentalized Autistic children and neither has acted professionally!

“I’m not worried about what this has done to your son, I’m worried about what it might have done to you”

I missed this little gem. I think if a doctor ever spoke about autism as if it was a terminal illness misdiagnosis, I would question that doctor’s credentials. And probably tell them to fuck off.

This is now how autism is diagnosed where I live either. To be honest had I had such a bizarre appointment with the first doctor I would have gone straight for a second opinion with a specialist.

OP, you really need to get your child assessed properly. I don't know the process in Australia but what you've described cannot be right. You can't tell for a 2 minute observation whether a child is autistic or not. So I wouldn't take what either of the doctors have said as being right to be honest. Look in to it properly, find a pead who actually specialises in autism and diagnosis. It takes multiple professionals to assess autism.

Also, I would say that being chatty and sociable doesn't mean he is not autistic. It doesn't mean he is either of course, but you really should equip yourself with as much information on autism as possible. Prepare yourself for either outcome. My DS is very chatty, very sociable, loves people but he had a diagnosis of aspergers syndrome.

We went through the same lengthy process too @AndwhenyougetthereFoffsomemore.

And that's only after you manage to get a referral put in place then wait to see specialists etc etc. Definitely not a spur of the moment thing!

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 is not necessarily true. One of my twins was diagnosed with autism at his first appointment - he had already seen SALT and the appointment was with a paed and OT but still. He is pretty textbook and ASD is his only diagnosis.

His twin brother is more complex - took two appointments but he’d been seeing other medical professionals from birth. He is the one where I slightly question the ASD diagnosis just because he has other diagnoses and it’s hard to establish what’s what, but he had significant regression and they can’t find any other cause, plus he’s delayed across the board so has issues in all the areas.

It does sound like there wasn’t enough investigation here, but it’s not always a long process to a diagnosis especially in younger children (my twins were 2, apparently the process from 3 onwards here is more complex)

I have a child with an ASD diagnosis that I was initially skeptical of. Basically, I don’t think that at 3.5 years you can be sure either way. The speech delay is a trait that combined with others might point towards a diagnosis. Your child may or may not develop more traits as he grows. Mine is 5.5 and there are things about him that are very much ASD but he’s also sociable, makes good friends, masks incredibly well and is thriving at school. I’m sure many of my friends would be incredulous if they knew he was diagnosed, but it’s there in black and white, and his paediatrician who is an expert in diagnosis of ASD is very sure. It’s still a waiting game though, we have no idea if and when his ASD will mark him as being different to his peers

Basically, I don’t think that at 3.5 years you can be sure either way.

Again, I disagree. I appreciate it can be complex to pick everything apart but in some children you definitely can tell before 3.5. Mine are 3.5 now, it’s still as clear now as it was when they were diagnosed over a year ago. They’ll be starting a specialist school with other children aged 2-5 who also have a diagnosis and for whom it’s very clear.

I feel very fortunate to have had diagnosis so early without a fight (have saved the fight for everything else as god knows we have needed it).

OP, if it were me I would want to know why the original doctor made the diagnosis and ensure that all the concerns she had are addressed.

An assessment for autism is a lengthy and in depth process, no one can look at a dd1 and decide that they have autism.

In the UK here. My son was finally diagnosed at the age of 8, they are reluctant to diagnose autism so early in case a child is just a late developer. After input of various professionals such as speech and language, occupational therapy, educational psychologist and the peadiatrician he finally got the diagnosis. They told me it actually needs 2 professionals to formally give the autism diagnosis. In your position I think I would put in a complaint.

To be honest, both of them sound incompetent. Neither should be making spot diagnoses like that without at least some multi-disciplinary testing and a full ADOS assessment.

@Nekoness
Meh, I lost three stone the year my son was diagnosed because I was so stressed. Think I would appreciate that acknowledgment

First pead was appalling

At keast hes not licking the walls? you shoujld have reported her just for that ignorant cow