Mom needing help understanding Autism

[Dahlia]

Hello. My youngest child, who is 5, has an atypical neurological development. We don’t know the cause yet, just that he has a speech delay. The delay is both expressive and receptive and echolalia is very common in his speech (both delayed and immediate). He also has some other quirky behavior and some motor issues. He had an autism test last year and they said he wasn’t autistic. We went to a neurologist, trying to understand why he has a delay and how to help, and the neurologist is convinced it’s is autism and wants another evaluation done.

So here is the part that I need help with: a lot of the outward behaviors he has could give you an autism diagnosis based on the definition in the DSM-5 but I don’t think that he is autistic. The reason I think this is that all the things I have read make it seem like the communication delays are supposed to be caused by decreased interest in engaging social interaction. That part doesn’t fit. My son has a speech delay, but that isn’t the reason - his desire to interact far exceeds his ability to interact. Lots of eye contact and non-verbal communication. Lots of the same verbal interaction, seemingly bc he wants to interact and this is how he can do it. He also is very mellow, calm, content and easy going. So my question is which one matters? If he technically meets the definition but not the model of autism, is he autistic? Does that model fit your experience of being autistic? Are there people out there who are like my son and autistic?

(Note: the attachment is from the preface of “The PRT pocket guide”)

 

[OlLiE]

autism is a medical condition that should be diagnosed by an external medical professional,
that is why they have often studied for 8-10 years to specialise in an area
while online tests and descriptions can give you an indication, it is not a diagnosis
a same set of 'symptoms' can most likely point to a number of different outcomes

the diagnosis in my country consisted of a 3 day screening, including iq test, computer tests to evaluate how i take in info, writing creativity test, picture interpretation tests, ....
if i had had a formal diagnosis at a younger age, maybe i wouldn't have spent most of my life wondering why i was different, what was wrong with me, why i didn't belong

i only got my diagnosis in my 40's and then finally understood and accepted myself for who i am, strengths and shortcomings

good luck

 

[clg114]

Hello. My youngest child, who is 5, has an atypical neurological development. We don’t know the cause yet, just that he has a speech delay. The delay is both expressive and receptive and echolalia is very common in his speech (both delayed and immediate). He also has some other quirky behavior and some motor issues. He had an autism test last year and they said he wasn’t autistic. We went to a neurologist, trying to understand why he has a delay and how to help, and the neurologist is convinced it’s is autism and wants another evaluation done.

So here is the part that I need help with: a lot of the outward behaviors he has could give you an autism diagnosis based on the definition in the DSM-5 but I don’t think that he is autistic. The reason I think this is that all the things I have read make it seem like the communication delays are supposed to be caused by decreased interest in engaging social interaction. That part doesn’t fit. My son has a speech delay, but that isn’t the reason - his desire to interact far exceeds his ability to interact. Lots of eye contact and non-verbal communication. Lots of the same verbal interaction, seemingly bc he wants to interact and this is how he can do it. He also is very mellow, calm, content and easy going. So my question is which one matters? If he technically meets the definition but not the model of autism, is he autistic? Does that model fit your experience of being autistic? Are there people out there who are like my son and autistic?

(Note: the attachment is from the preface of “The PRT pocket guide”)

Hello and welcome to Aspies Center.

You are seeking to understand something that is very, very complex, particularly for a NT. However, it is important that you learn as much as you can through research. This will help you and your son. Keep in mind that autistic people, just like everyone else, are all different. Your son may meet the DSM-5 criteria in some areas and not others.

As for myself, it is not a lack of interest or desire to communicate socially. It is a lack of understanding non-verbal communication. Social communication involves a lot non-verbal communication, like body posture, voice tone, eye contact and much more. All of this goes over my head, making it very hard to socialize. This why many autistic people are very literal in their speech and understanding.

I believe consoling would be in order for your son. I also believe that taking your neurologists advice would in order. Best of luck to you and your son.

 

[WereBear]

This is such a complex issue it is difficult to speak definitively. If the issue is speech, concentrate on that. Find an open-minded therapist. Simply pursue what works and forget about labels if that is in your way.

 

[Dahlia]

Thank you for replying, all of you. I appreciate it. Clg- thank you for answering the part of my question about social desire. That has been the part that has been confusing me most.

To reassure all of you - my son is happy and very very loved and well taken care of. He is in speech therapy and OT well as doing other activities for fun. No one is teasing him or being mean to him and we are following up on all the doctor things we are asked to follow up on. We’re doing everything we can to help him.

I’m not afraid of a label - the differences are large enough that there is going to be a label. I just want to be sure it is the right label. Some of the advice we have been given (intended for autistic children in general) has been along the lines of taking his favorite toys and putting them out of reach so he has to ask us for them. It’s mean. Maybe it’s bad advice in general, but for my son it’s horrible. He would just do without and be sad. It wouldn’t make him talk. He is already trying hard to communicate, it is just much much harder for him to come up with words.

Things like that advice and the pic I posted originally are why I am resisting this particular label.... but I am wondering if the problem is really the model and advice. Does your social desire exceed your ability to communicate?

 

[Dahlia]

I wanted to post a follow up in case anyone was interested. Today we met with the psychologist that did my son’s evaluation last year. The way he explained it, there were 3 things we were looking at: decreased social motivation, communication issues, and repetitive behaviors. My son has 2 of the 3 (last 2) instead of all three so it is an atypical presentation, but he could be given a provisional diagnosis of autism and that would allow him to get some additional services like ABA.

Thank you for trying to help me. I guess I was asking a question that couldn’t really be answered. I think I will stick around here and read. I also wanted to add that I’m not sure it’s sensible to assume the parent of an autistic child (or perhaps anyone, unseen) is NT. I am not NT. If not being autistic is what was meant, it is still a bit of an assumption. I have quite a lot of aspie traits and I am not sure, myself, that I am not autistic. I am an intj, I have sensory issues, and have a track record of being confused and oblivious, socially. I also came here frustrated because I was taking things very literally and they conflicted and I couldn’t make sense of it. So maybe I am not autistic, but if I’m not, I am not so far away that it seems strange to me, either.

 

[the_tortoise]

I don't think all clinicians believe decreased social motivation is a core requirement for diagnosis .

It's not written into the DSM-IV, DSM-5, or ICD-10.... in the DSM-IV there is "a lack of spontaneous seeking to share enjoyment, interests or achievements with other people (e.g., by a lack of showing, bringing or pointing out objects of interest)" .....But that is one out of 3 possible symptoms in a category where someone has to meet 2/3....One of the other 2 in that section is "lack of social or emotional reciprocity" but I think a person can lack those things and still be very socially interested/motivated.

 

[Dahlia]

Update: My kiddo is autistic. As he has acquired more language in the last year, his behaviors and differences have become more pronounced, not less.

He is a sweet, happy, loving (and much loved), mellow, little guy and I think the stupid PRT handbook is getting tossed.

 

[WereBear]

He is a sweet, happy, loving (and much loved), mellow, little guy and I think the stupid PRT handbook is getting tossed.

I think that’s a good way of thinking about it, because autism is pathologized: everything we do gets seen as a “disorder” when it’s simply... different.

I was told to study hard and get good grades, and when I did, I was bullied and told no one would date a smart girl.

I was told reading was very important, then nagged for “reading so much.” It was something I enjoyed, but instead of being seen as intellectually curious and a future scholar or scientist, I was forced into social situations or told to do sports; both of which bored me.

Now that I know why I “stim” I realize it is a safety valve for too much input and that being told to sit still put way too much stress on me.

On and on, the pointless rules.