Confused about status of entire family

[Nervous nelly]

Hi. I’ve been stressing for practically a year about my kids and what’s going on with them. Learning about the spectrum has made me wonder if I’m on it as many things resonate for me (but mostly the social anxiety stuff, not sensory)

My 4 year old daughter has been called autistic by her school, but I noticed that the only options other than autistic have to do with intellectual disability so there aren’t many options. Her private speech therapist didn’t think she was autistic. She has a speech delay and some weird quirks (sometimes a weird gait, sometimes repeats words over and over, sometimes spaces out) and is also very advanced in some areas (can read and write well, add and subtract). Sounds like possible autism— but she’s also very social (loves being around/interacting with people even though her language is behind), and I don’t see any signs of sensory issues. If not autism, any clue what’s going on?

My son on the other hand is 2 and barely talking- a handful of words and a lot of babbling. He also sometimes aggressively avoids eye contact (looks everywhere but my face when I try to get him to look at me). He doesn’t point, but we don’t really point much (we really struggle with social stuff). He often doesn’t respond to his name unless you offer a bribe. However, he’s affectionate and sometimes flirtatious (grins at people and expects a response). He’s also got excellent imitation skills (will imitate smaller hand movements as well as larger movements like walking backward). Also, he doesn’t seem to have any sensory issues.

I hope it’s ok to post this here as I don’t know the real status of any of us. I don’t care to get a diagnosis for myself at this point, and I’m nervous about pursuing a diagnosis for my kids and have them be misdiagnosed or have trouble getting health insurance down the road. They’re already both in speech therapy and my son sees a developmental expert for his speech and social issues. Just wondering if anyone sees themselves or their kids in what I describe and have any advice for further helping them. Thank you!

 

[Gracey]

There are some interesting articles and personal accounts about females on the spectrum.
Their ability to mimic in order to fit in and be accepted in social groups.

To do the above means spending time with groups socially, to observe how others act/behave and copy.

I’m useless at links so you might have to google that

 

[Major Tom]

Everyone on the spectrum is different, there is no cookie cutter version of autism. I think even psychiatrists forget that. (Probably because most are not autistic themselves).
Early intervention is key, and I'm glad they are getting speech therapy. It might be better to dig deeper as to why they are having the speech issues and other issues as well.
It's a sad world that makes pareñts afraid to get their kids diagnosed because of insurance worries for the future, though somewhat understandable.
I have a 6 year old son with autism 3 and intellectual disabilities. Your description of your son sounds a bit similar to how he was at your son's age. I hope this helps, and sorry if I said anything too bluntly.
Also, welcome to the site!

 

[Nervous nelly]

Everyone on the spectrum is different, there is no cookie cutter version of autism. I think even psychiatrists forget that. (Probably because most are not autistic themselves).
Early intervention is key, and I'm glad they are getting speech therapy. It might be better to dig deeper as to why they are having the speech issues and other issues as well.
It's a sad world that makes pareñts afraid to get their kids diagnosed because of insurance worries for the future, though somewhat understandable.
I have a 6 year old son with autism 3 and intellectual disabilities. Your description of your son sounds a bit similar to how he was at your son's age. I hope this helps, and sorry if I said anything too bluntly.
Also, welcome to the site!

Thanks both of you for your responses. Did your son not have sensory issues? When I read advice for parents of autistic toddlers or talk with moms of diagnosed autistic kids, the focus seems to heavily be on dealing with sensory stuff (feeding, teeth brushing, difficulty with transitions, meltdowns) and my son doesn’t have trouble with any of these things. It leaves me feeling like my kids don’t fit with the “normal” kids but don’t quite fit with the autistic kids either. So I’m not sure how exactly to help them or where to get advice.

 

[Clueless in Canada]

Assuming you are North American, you might want to look at the diagnostic criteria from the DSM V. It helps to separate the actual criteria from the plethora of traits you will read and hear about and which can vary so much between individuals. For your daughter's sake also look up autistic traits in females and try looking on youtube for a video by Tony Atwood about how girls typically present differently.

 

[Aspychata]

You are a concerned mom, and you just want your babies to survive and grow into healthy adults. It's still early and if you continue to show them love and acceptance, that's half the battle. Truthfully, some kids develop faster than others. l couldn't get my daughter out of diapers for the life of me, it took creative thinking. l thought she was slow verbally, but then l listened to old videos, and realized she was saying sentences, l just couldn't make out the words. She started playing Pokemon and l believed that helped her in several areas, hand dexterity, cognitive, eye coordination (slight issue with eye that resolved). She also played with a younger boy, so that helped socially, because l didn't groom her to be a "pretty girl". She was computer savy early, she had her own computer, and cruised the internet. So don't despair, just try to expose them to many experiences, help build their confidence, read, talk to them, and you are a fantastic parent, by the way.

 

[Bolletje]

I’m a female with autism, and I was a very outgoing and social child without sensory issues. My speech development was very advanced for my age. I wasnt diagnosed until I was in my late twenties due to this. Which is to say, it can be very hard to tell and not everyone exhibits the same symptoms, doubly so when it comes to females on the spectrum.

 

[Nervous Rex]

First, @Nervous nelly, from one Nervous to another: Nice name.

I understand your hesitancy to seek a formal diagnosis. I wouldn't go to a doctor just for a diagnosis. But if your children need help coping and advancing, then I would look for professional help (a counselor, speech therapy, occupational therapy, etc. - whatever you feel like they need help with). If a diagnosis comes out of that, so be it. If not, that's fine too - the main concern should be the areas you feel your children need help in.

 

[Nervous nelly]

Assuming you are North American, you might want to look at the diagnostic criteria from the DSM V. It helps to separate the actual criteria from the plethora of traits you will read and hear about and which can vary so much between individuals. For your daughter's sake also look up autistic traits in females and try looking on youtube for a video by Tony Atwood about how girls typically present differently.

Thank you! I’ve looked more into DSM V. I’m not sure that I see the rigid or fixed interests or repetitive motions in my kids. My daughter is really into art and my son into cars but they have other interests and can easily be redirected (like no meltdowns if you pull them from their preferred activity) and nothing along the lines of lining things up or wanting things a certain way. But maybe there’s something I’m missing. It’s frustrating that autism encompasses an impossibly large number of different presentations.

 

[Nervous nelly]

I’m a female with autism, and I was a very outgoing and social child without sensory issues. My speech development was very advanced for my age. I wasnt diagnosed until I was in my late twenties due to this. Which is to say, it can be very hard to tell and not everyone exhibits the same symptoms, doubly so when it comes to females on the spectrum.

Thank you. Were there any signs you feel your parents could have picked up on? I read the current criteria and about how females differ that someone suggested above, and I see her in the communication/social part but not in the fixed interests/routines etc that make up the other half of the pie.

 

[Nervous nelly]

First, @Nervous nelly, from one Nervous to another: Nice name.

I understand your hesitancy to seek a formal diagnosis. I wouldn't go to a doctor just for a diagnosis. But if your children need help coping and advancing, then I would look for professional help (a counselor, speech therapy, occupational therapy, etc. - whatever you feel like they need help with). If a diagnosis comes out of that, so be it. If not, that's fine too - the main concern should be the areas you feel your children need help in.

Thank you. We’ve just started floortime with my son which I understand is supoosed to help with an array of developmental issues. They’re both in speech. Any other suggestions of things that are known to help with social and language delays?

 

[Clueless in Canada]

Thank you! I’ve looked more into DSM V. I’m not sure that I see the rigid or fixed interests or repetitive motions in my kids. My daughter is really into art and my son into cars but they have other interests and can easily be redirected (like no meltdowns if you pull them from their preferred activity) and nothing along the lines of lining things up or wanting things a certain way. But maybe there’s something I’m missing. It’s frustrating that autism encompasses an impossibly large number of different presentations.

Part of the challenge is that there is the statement in there about symptoms developing when demands exceed ability to cope and individuals who might fit into ASD 1 might not display some of these traits when older and life gets a bit more difficult and demanding. Also the differences in girls are not yet well understood. There is also Broad Autism Phenotype, which is where an individual does have many traits of autism but not enough or not the right combination to meet diagnostic criteria.

As a mother myself whose now adult son also presents in the more female-associated manner, I will suggest that you watch for signs of shutdown in the form of what looks like fatigue, vague illness, social withdrawl and depression in your children if they are not prone to the more temper tantrum-like meltdown. As a former school teacher I can also tell you that unfortunately the children who suffer more inwardly and do not cause any problems for others are less likely to get help or an accurate diagnosis. It sounds like you are already really good at knowing them, supporting them and loving them just as they are. Keep on being that awesome mother.

 

[Gracey]

How about bath time or bed time ?(children)
Strict routine around bath time? Before sleep?
Any teeth grinding ?
Moving hands or feet repetitively under covers just before nodding off?

How about Brushing teeth? That okay?

Labels in clothing being scratchy or irritating?
Really not wanting to wear a certain item of clothing?
Protesting more than a usual demonstration of independence and or nudging at boundaries,
But you could never figure out why?

Perfection with things like the ‘Green cross code’ (UK road crossing safety routine)
Or particularly moral? Black and white right and wrong - beyond the usual snitching on siblings?

Do the children share things quite easily? Toys? Space? Parent?

 

[Clueless in Canada]

Try looking up the Ages and Stages Questionnaire. I think the CDC website has a link to it. Healthcare Providers | Autism Spectrum Disorder (ASD) | NCBDDD | CDC

 

[Nervous nelly]

How about bath time or bed time ?(children)
Strict routine around bath time? Before sleep?
Any teeth grinding ?
Moving hands or feet repetitively under covers just before nodding off?

How about Brushing teeth? That okay?

Labels in clothing being scratchy or irritating?
Really not wanting to wear a certain item of clothing?
Protesting more than a usual demonstration of independence and or nudging at boundaries,
But you could never figure out why?

Perfection with things like the ‘Green cross code’ (UK road crossing safety routine)
Or particularly moral? Black and white right and wrong - beyond the usual snitching on siblings?

Do the children share things quite easily? Toys? Space? Parent?

Thanks! I read the book “out of sync child” about sensory issues and didn’t really see my kids there. My daughter occasionally resists wearing certain things but she’ll change her mind and wear it a few days later so I don’t think there’s a sensory issue. No issues with teeth brushing, tags in clothes, bright lights or noisy crowded places. Not sure about moral black and white as they don’t have the language yet. It sounds like it’s possible to be on the spectrum without sensory issues? But those people seem to be very high functioning and both my kids have a language delay.