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?

Diagnosis is completely up in the air at the moment for the whole range of neurodivergence issues. So a diagnosis is fairly meaningless anyway. As you’ve already seen your child is developing, doing active play etc. Just don’t accept the diagnosis and don’t define him by it

Reading your post was like reading about my little boy. He is about to turn 2 and has only just started talking and is obsessed with numbers and letters etc. However socially seems 'normal', perhaps a bit shy but is fine mixing with other children and interested in what they are doing etc. He loves patterns and lining things up. He also has a few sensory issues around food and clothing.

Whilst the thought of autism or neurodivergence has crossed my mind, I've not mentioned it to a doctor or HV as yet as he seems so young and is still making progress with things, just in his own time. He was with a childminder for a year, but hasn't been for the last couple of months as I've just had number 2 and tbh he was never very happy at the CM anyway. We had a few conversations about his sensory issues, and they said they were happy to write supporting evidence if I did seek help via GP, but again I just felt he was still very young.

I think with the 'diagnosis' you have, the fact they've said it might 'go away' is bonkers. Autism just doesn't go away. His medical records will be private, so you have no need to mention anything about autism when he starts school etc, and if he catches up with his peers in terms of speech and language, I would maybe just see a different gp/get a letter written by S&L therapist and then there would be an entry on his medicsl records saying they have no concerns/earlier concerns or suspicions around autism are no longer accurate? Sounds like your GP is just handing out a diagnosis because that's what he thinks you want than actually considering all the information.

Who diagnosed him? Was this NHS - in which case it should have been a multidisciplinary assessment.

My son was diagnosed at just 3 following a 6 week multidisciplinary assessment. It was quite handy being diagnosed early tbh. If your son ends up not needing a dx then it will be relatively easy to lose it as he grows.

My son was flagged by the HV just before he turned 3, but my DH handwaved it away, he was just clever knowing all his numbers up to 1000, really clever too to be so interested in how things work, lifts, writing, amazing how he knew so much about countries and could memorise every flag.. School dismissed it too. He's just a quirky boy! But I've always known and noone listened to me.

He's now 10 and is on the pathway for an ASD diagnosis after anxiety so bad he was referred to CAMHS. Take the diagnosis - if it's wrong, no harm done, but if not, then it will be easier to access support for him when he starts school.

@LemonDrizz I think that is the part that makes this sound insane, I feel like if doctors are diagnosing a child as autistic, it should be permanent. The fact they said we can take him to get reassessed and it could "go away" made her sound like a quack, and is really making me question their judgement. Maybe i'm uneducated re. spectrum matters, but it made no sense to me.

@Climbinghigher we are in another country (Brit raising family abroad), but it is the equivalent of the NHS. The local healthcare service have outsourced psychologists, speech pathologists etc that they pay to perform assessments and recommend services. If criteria are met, free services can be given. We didn't choose this doctor, she was assigned to us.

I do believe that he will likely be neurodivergent in some way when older, he does think differently, and processes information differently, but I (echoed by his nursery worker who sees so many children) am concerned by the need to label young children autistic, as parents seem to want it for their toddlers. If he were to get diagnosed with something at school age, I think that is entirely different, and i'd be fully supportive, but at this age it seemed nuts to me to be applying the label. The kicker is that she said he was extremely highly functioning, so he wouldn't qualify for autism services, so I was kind of like "Why even say it vs just wait and see"? She also tried to push us to get him into a genetic testing program for autistic toddlers research, which wouldn't benefit us at all, and that really felt weird.

I think sometimes they say it might disappear to make people feel better or to highlight that it is hard to see what will happen developmentally. That is true tbf. The kids who were diagnosed the same time as my son are all grown up now. As pre-schoolers they looked pretty similar but their outcomes as adults are very wide ranging.

In the U.K. early dx can lead to some genetic testing (for Frag X at least) but more often these days more extensive testing. Of course you don’t have to take part in research, especially if it won’t benefit you at all. There’s also a lot of ethical issues around extensive genetic testing so should come with a counselling session.

You must have had significant concerns to proceed with assessments though, surely?

For context my child was diagnosed at the same age. He has developed massively, beyond all recognition, from 2.5 years old. Still very much autistic though.

Also, a diagnosis is not a label.

@Golidlocksandthethreeswears We had concerns about development (mainly speech/developmental delay), but not significant. We only signed up for the checks as the nursery told us that if we applied through the local health service we would qualify for free speech therapy regardless of our income until age 3, which is a huge benefit. They did the speech/OT assessments, and he qualified based on delays, but then we were asked to go for a psychology assessment in case there were additional items they could give us after age 3 (standard procedure to try in case according to our case worker), but we don't qualify post assessment, and now we have an extra worry/diagnosis that we aren't really sure we agree with, and we're not sure where this goes. I know that I'm being a bit precious here, but I think we will wait and get another assessment paid for privately in 6m to a year to see if they agree. The doctor was just so quick to diagnose, and made so many flippant comments that I feel like she was just handing out autism diagnoses like chocolate bars. Maybe it was just her manner...

This doesn’t sound like a formal diagnosis of they’re saying he could grow out of it. Autism is something you’re born with and will always be. It doesn’t just disappear.

Professionals don’t give people autism. They observe autism or not in people. If prople are assessed or not they still are or aren’t autistic. Knowing early is great in terms of professionals, you and most importantly your child understanding themsleves.

Just FYI the genomics laboratory have just stopped doing genetic analysis for children without severe or profound learning disabilty.

Do you need to tell anyone about the diagnosis? Can you just keep it private for a year or two and see what happens?

FWIW this sounds like one of my DC who is now late primary and completely fine. Very clever, solid group of friends, encyclopaedic knowledge about lots of stuff and doing absolutely fine.

For what it is worth I have two adult children with autism - diagnosed at 8 and 11 now both at uni. They are very intelligent, academic and funny and lovely people. Autism is not a barrier to a good life but early diagnosis is helpful to help lift those barriers and help them understand why they struggle. It is a neuro difference, based on social communication difficulties, sensory processing differences and repetitive behaviour/ interests. Intellectual disability does not need to be present to be diagnosed.

I do not see it as a label the diagnosis has taken me on a journey from denial (my kids aren't autistic they are just themselves), to a more enriched understanding of the world as well as my children.

The spectrum is not linear, it is more helpful to look at it as a spiky profile which affects individuals differently so you need to learn more about your child as they grow up to see what that looks like. If there has been a misdiagnosis then maybe this is all irrelevant but I recall all too well my shock / denial after my daughter was diagnosed so that in itself does not mean the doctor/s are wrong.

This doesn't sound like an assessment that would meet the diagnistic criteria in UK. Your son may or may not be autistic, but either way he won't grow in or out of it. If you wanted the assessment for the free speech and language support then you can now access that just see how he goes over time.

It sounds very different wherever you are to the system here in England, which is a multidisciplinary approach. Professionals involved in my sons (very obvious!) diagnosis included a paediatrician, speech and language therapist, occupational therapist, health visitor, nursery SENCO and local authority SENCO as well as parental input. Ultimately the diagnosis came from the paediatrician but with input and reports from all of the above.

Is it an official diagnosis you've received, or a "maybe, let's see what happens" kind of conversation?

I know a little boy with autism who was diagnosed around 2 and since starting school has absolutely thrived. The early diagnosis has meant he has had support through his preschool years and went straight into a school that was able to meet his needs and within the first half term had made great improvements.

If early diagnosis means his needs are assessed and managed even if in the fullness of time his needs don't actually come under the umbrella of autism I don't think it's necessarily a bad thing. Experiences of autism varies massively from child to child, adult to adult and often they don't diagnose until later as there can be ambiguity about whether what is being observed is autism or potentially something else. I'd still see it as an advantage that there's a flag for more support

We had a very similar experience with our son. Lots of flags during early developmental years, constantly waved off as "quirky", "lazy" "only child" behaviour during primary school years, with me constantly thinking there's something going on here. DH (who I also suspect is on the spectrum) just waved ot off as well.

It all fell apart for my son when he entered secondary school, and he had an autism diagnosis just before his 13th birthday. I regret not pushing sooner for an evaluation. It would have saved us all a lot of grief during those early school years.

Take your child's diagnosis and keep it handy. Eventually you will need it.

If your child is autistic, they won’t grow out of it @saltnvinegarhulahoops . Your son reads exactly like my eldest at that age, hyper numerical, learned to read by 3, could/can make eye contact but would prefer not to interact with others. Autism isn’t a learning disability on its own, it’s a social/communication disorder and it reads like your son struggles in these areas more than an average child. My youngest was put on the pathway for diagnosis at 18 months, with two older children then diagnosed the traits do become far more noticeable at a younger age. Their dad has recognised since that he is autistic himself so there’s a direct familial links (probably from my side as well). It’s not the end of the world, there’s a lot of overreactions going on at the moment about ND people never being able to work or have a life, but many people who are autistic live pretty typical lives. And an official diagnosis means very little, what is far more important is getting support and therapies from as soon as the traits are recognised.

I think that you need to ask some other parents of autistic kids in the country you are in whether the stigma of a diagnosis outweighs the benefits for a young child.

In the uk an early diagnosis is overwhelmingly positive and I would be saying to you not to do anything which might cast doubt on it. Unless your child is very very disabled in the uk a clear diagnosis is the only way to get any reasonable level of support in school etc. The law says that it is based on need but that absolutely isn’t the case.

Id also add here that it’s very common for professionals to be able to diagnose quickly. When you see 100 children a week with similar symptoms you are very quickly able to work out which are autistic and which aren’t. Anecdotally this quick diagnosis is common.

When we were talking to the primary senco he was very much emphasizing that the time that the wheels always come off for children that get by is the transition to secondary school.
He said it's essential to have diagnosis, ehcp if needed and any other support in place before that, otherwise it could be a disaster.
So many ADHD and ASD children are "fine" (not quite) and quirky in primary and then end up burned out and out of school completely after a year of secondary school.

So having things in place before primary gets you already on the road well in advance. And a lot of the shock is getting over it as a parent, there are a few stages to acceptance that your child isn't how you expected and maybe you yourself or your partner are also autistic. There was a lot of stiff upper lip and carry on in previous generations that needs to be undone.

Good luck, and it's a new journey but it's not a boring one and you're still the same family!

How will it help your child, knowing he has this 'diagnosis'?

And please whatever you do, don't go around telling him he's autistic, so apparently he can't/can do XYZ.

Extremely damaging

Even the bloody professionals are saying they are giving these diagnosis away like toffees!

Here we go again - prepare to find out you're actually autistic too!!!! It explains everything!!!!

All your failings!! Everything!

😂

My dd was diagnosed at 2.5 but was non verbal and had delays in 5/6 areas tested. By 4 she had 100 words and fully verbal at 5. She’s very clever, stubborn though! (Adult)

My niece was diagnosed at this age, but she is profoundly autistic. Very sociable and friendly but at (now) 15 not many words. She went to a special school from age four and had loads of therapy before that and it helped her mother understand her needs. Getting an early diagnosis can really help, but there’s such a vast range you may not see the benefit. But something must have led to having him assessed, so why reject it? Use it to help figure out his needs as he grows. Of course if you think they are wrong, or hasty as he has developed since, then get him reassessed. Autism does not go away, but an incorrect diagnosis is just that and they could be wrong.

I'm an autistic adult, and a parent of a child with autism. I think my input can be very valuable especially to your OP.

I wish I had my diagnosis sooner. I wish I was "pigeonholed" with it earlier while I was at school. I wish I knew more about myself, and could therefore forgive/understand myself rather than trying to force myself into acting like other people my age are "supposed" to.

What you describe does sound like autistic traits of that age.

For reference I finished schooling with 11 GCSEs, 6 A-levels, a degree, and qualified as an English teacher. However, Ive been unable to cope working in a school environment and left, then diagnosed as an adult. If I had it all in place before maybe things would have been different.

My nephew was diagnosed with autism at the age of 3, it's not unheard of.