Autism Diagnosis at 2 - Feels Wrong

[saltnvinegarhulahoops]

I'm probably going to be told to get back in my box, but I could use a head wobble. We have a child who has been diagnosed autistic at 2.5. It feels wrong to put a label on him at this age, when he is developing so much, and has made so much progress in the last few months. Does anyone think that some medical professionals are overly happy to diagnose autism? I get that it is a spectrum, but it feels overdiagnosed in our situation. The doctor noted that a lot of parents "want the diagnosis, so we should be happy". It feels very much the opposite.

For context, we have a lovely 2.5 year old boy. Makes eye contact, seeks out other children to play, but doesn't have many spoken words (probably at 100 now, but still learning) so doesn't introduce himself/have the confidence to get in there and interact (but tries now). He is very smart, can read words already, and knows what they mean (isn't just repeating paterns/heard words), is somewhat hyperfixated on letters/numbers/colours/animals (generally patterns), likely hyperlexic. Has a speech delay, didn't talk at all until age 2, now he is 2.5 the language is coming suddenly, but he's a year behind his sibling developmentally at the same age for language/play. His doctor has largely passed it off as "he is a boy, second child, its normal". His nursery recommended an evaluation due to the speech delay, which resulted in speech and OT being recommended, which has been great and has had gigantic improvements in just a month. The speech lady also recommended him to a psychologist who spent an hour with him, had him match words, patterns etc, asked us if he did imaginative play which he is starting to, but didn't at the time of the evaluation, and suddenly he has a full autism diagnosis, despite being told that he has no intellectual issues, and is highly functioning. We have been told to get him reassessed by 5 as the autism might "go away". I'm feeling very frustrated as we were told that at this young an age a doctor shouldn't diagnose autism, but would instead show a developmental delay and recommend services. Now I worry that there is a permenent record of my child which could pidgeonhole him for life, cause school issues down the road etc. I know this is a minor problem in the grand scale of things, but I feel like i'm dong wrong by my child. His nursery is also shocked by the diagnosis and disagrees with it. They commented that they think he is likely somewhat neurodivergent rather than autistic, but were really taken back by the diagnosis.

I'm feeling like a bit of a shit mum tbh for putting him through this process now. Does anyone have any thoughts that could help?

Honestly, it’s a win win situation. Your DS may well acquire skills and abilities that make it look as if ‘ he’s grown out of it’.

However if he hits an obstacle at some point- transitions are the usual hiccup area- you already have information to hand to help him navigate it.

Sometimes support looks like formal additional input. Sometimes it looks like getting guidance not punishment when he says something inappropriate, or refuses an instruction to change for PE on the wrong day.

We do a lot of counterproductive things with undiagnosed ND children and accidentally make things worse for them. This diagnosis could reduce that happening.

My DH would be considered aspergers back when that was applied in the 90s. He is now very successful in his field, but it took a lot of work on the social emotional side to learn how to interact with others/integrate, well into his 20s before he really got there. He would have been called "smart but quirky" at school, was pretty badly bullied as a result. I think he looks at all the people who are being diagnosed autistic but some (not all) lean into it in his opinion as an excuse as to why they can't do x, without really trying and finds it very frustrating. He (and I) are extremely reluctant to ever go down that road with our child, and want to continue to get him the speech/OT now to allow him to function "normally" as an older child and adult when he gets there. I don't disagree that one day he could be diagnosed with something on the spectrum, but a one hour consultation at age 2 seems insane to get that quick of a diagnosis. I'd be a whole lot more comfortable if they would wait and assess him at 4-5 vs 2 given that he doesn't get any additional services as a result anyway.

In the uk an nhs diagnosis requires referral from a professional and an assessment by a team of specialists. They don’t just hand out diagnosis's for fun.

obviously you are in a different country so may have had a different experience

You are gambling with your child's mental health and development. Your husband is, to be blunt, being very arrogant. I can assure you that for every 1 autistic who finds life easy without diagnosis, there are many more who struggle through life and barely get there.

First of all it's a very good thing that autistics are now clearly able to say "I find this hard" not a failing like your DH implies. Don't fall into the older gen trap of "well if I suffered and made it, so can they!" Things should be easier for future generations.

If you remove the diagnosis and he struggles and the support doesn't appear on time, then you have potentially lasting problems. If you get support and he doesn't need it, then you're all good.

To be clear, I am Asperger's myself.

The biggest risk of damage is from people making statements like the above. It is ignorant to assume that people with an autism diagnosis are damaged purely by being identified as autistic. Regardless of diagnosis an autistic person will know they are different, and be treated poorly or denied opportunities because of this. Diagnosis has not prevented my children from doing things quite the opposite in fact. They are well supported and managing university. In contrast to their aunt's/ uncles/ grand parents who are/ were neurodiverse and either late diagnosed or not diagnosed at all. Huge amount of mental illness and struggle/ early death in my wider family. That is where the damage happens when you lack understanding of why you struggle and what could help.

25% of adults in the UK will have mental health issues at some point. For autistic people this number rises to 80%.

Research shows that early diagnosis is a protect health factor.

My 8 year old is austistic. The adaptations school make are her starting school 10 min early, movement breaks (she is sent to deliver things around the school), teacher uses her name when giving instructions, she uses ear loops when it’s noisy, has a fidget toy, some times works outside the classroom (desk in the coridoor) so she can focus, she has access to a lunch time club but doesn’t use it, teacher pre warns her on fire alarm test day and a specialist TA comes into school once a week to support her with understanding her diagnosis and work out what helps her regulate. All these small changes make a positive difference to her and helping her be successful at school.

She is a very clever child, top 1% of population in terms of IQ, working above expectated at all subjects, is popular class member with lots of friends.

I can definitely see how this could help, our son very much struggles with being contained/sitting still, and it is interesting to read the accommodations being made. Being able to do circle time/sit at through a meal is something that OT is trying to help with at the moment.

To be very clear, I completely support him getting assessed/diagnosed before school (closer to school age), but I do feel like 2 is too young for it in his case. He is going to continue with OT and speech regardless until school age. I honestly think the thing that triggered me the most was the comment from the doctor that his autism might go away by 5, which just goes against everything I've read/heard and made me think that she didn't know what she was doing.

While I completely agree with what you've said in this post, your other comments are a little concerning regarding your attitude to getting a diagnosis and/or receiving support which is the issue here.

The doctors off the cuff remark I would ignore as being ignorant. Doctors do sometimes do this, especially if it's not their area of expertise. In the UK for under 18s it's multi-disciplinary involving many professionals. For me as an adult I had 3-4 appointments with a learning disability nurse and a consultant psychiatrist, as well as my husband giving his input and having his own appointments to support the diagnosis.

Thing is there isnt somewhat neurodivergent theres specific conidtions it maybe that he has adhd too if he cant sit still.op i took rather a wait and see with my dd.
She had no speech delay or stims but always had sensory issues. And i thought just adhd. But she has gotten worse with age and can be very self directed.
On nhs still waiting 2+ years for assessment and now 13.

I would say whilst 100% of your countries diagnosis may not be correct. But getting kids diagnossed and helo at 2-3 is going to be so much better than uk where only severe kids are getting diagnosed really.
Even pre covid kids with speech delay were just fobbed off until at least school age.

Also i know 2 kids who have no asd signs but have still ended up with asd diagnosis. So even taking years is obviously not helping get good accuracy.

Absolutely no way they don't have autism signs but got a diagnosis.

I am a high masking autistic adult. I can come across as neurotypical for a reasonable length of time, but at great stress and effort. Females tend to be like that, and sometimes males can as well. I sometimes stim unconsciously but rarely.

Hi

Its soooo wrong for "health professional" to give such diagnosis to 2.5yo a specially when you describe in your post your child as you did. Maybe for children with obviously severe symptoms ,but not for your kid you described.

"The doctor noted that a lot of parents "want the diagnosis, so we should be happy" - this is next level!!! i never heard anything like that. Its outrageous!!

Now, when you saying "health professional" is it means he/she is qualified Developmental Pediatrician? Or he/she is just GP?

"We have been told to get him reassessed by 5 as the autism might "go away""
the comments you got from """""health professionals"""" is just awful ,this is something unheard of!!!

Which country you from?!