Son Just Diagnosed with Mild to Moderate ASD

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LisaM1031
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26 Apr 2022, 2:05 pm

I posted here a few months back about my son who I suspected was ASD and also had severe language delays. He was evaluated and just diagnosed with a mild to moderate case. The evaluator said she believes he will eventually overcome a lot of his challenges since he has some good cognitive skills and isn’t completely in his own world and that the language delay may make the ASD appear worse. So while it’s a bit hard for a parent to hear, the prognosis is good. I asked about this on here a while back and appreciate everyone’s support and personal stories since it seems like many of you have overcome a lot. Or maybe I should say “us” because I strongly believe I’m on the spectrum and was just never identified.



IsabellaLinton
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26 Apr 2022, 3:16 pm

Congrats on getting the diagnosis completed.
It's good that you had such a thorough assessment done.
What recommendations are they making for his language development?
I'm dx Moderate ASD and I'm selective mute.
I had a Speech-Language Pathologist when I was young, and again in adulthood.
You might also want to look into OT services for his communcation and other ASD needs.



kraftiekortie
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26 Apr 2022, 3:41 pm

It was thought that I had a "severe" case because I didn't speak and had other autistic characteristics. The prognosis wasn't good at the time I was evaluated when I was 3 or 4 years old. It was recommended that I be institutionalized.

Fortunately, I acquired speech when I was 5 1/2 years old, and was able to eventually graduate high school and college, and keep a clerical job.

Fortunately, things are much more advanced now on the autism front than the situation in the 1960s. I'm glad they see your son's cognitive strengths. This bodes well for his future. And I believe you will be a stalwart support system for your son.



LisaM1031
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26 Apr 2022, 4:39 pm

IsabellaLinton wrote:
Congrats on getting the diagnosis completed.
It's good that you had such a thorough assessment done.
What recommendations are they making for his language development?
I'm dx Moderate ASD and I'm selective mute.
I had a Speech-Language Pathologist when I was young, and again in adulthood.
You might also want to look into OT services for his communcation and other ASD needs.


I’m not entirely sure On recommendations yet. I have a meeting with the local school district in a couple of weeks to go over a transition plan. He is 2 now and has a speech therapist and after 3 will be transferred to the school district. We will also discuss preschool options and services.



ASPartOfMe
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26 Apr 2022, 9:45 pm

LisaM1031 wrote:
because I strongly believe I’m on the spectrum and was just never identified.

As others have said it looks like your son has a good future.

Have you thought about a formal diagnosis for yourself?


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LisaM1031
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26 Apr 2022, 10:36 pm

ASPartOfMe wrote:
LisaM1031 wrote:
because I strongly believe I’m on the spectrum and was just never identified.

As others have said it looks like your son has a good future.

Have you thought about a formal diagnosis for yourself?


I’m a bit hesitant to go this route for a few reasons. First, I hear it’s very expensive. Secondly, a lot of people, even professionals, have no idea what ASD looks like in high functioning adults so I feel like my traits will just be attributed to something else. And I may be a bit paranoid here, but lastly, I don’t know if I want something like that documented and risk being labeled as an unfit mother by the system.



kraftiekortie
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26 Apr 2022, 10:55 pm

They can’t take away your parental rights based on an autism diagnosis.

There are many autistic mothers and fathers here who have successfully raised kids, or who are successfully raising kids now.



IsabellaLinton
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26 Apr 2022, 11:15 pm

Hi Lisa,

I can add a bit of perspective here because I was diagnosed at 49 and I've been a single mother since the 1990s. When I read your comment my first reaction was that I wanted to write and tell you the benefits of an adult diagnosis, and confirm that ASD wouldn't be used against you as a mother. I've had a few minutes to sit on these thoughts and although I might be writing prematurely, here's what I think upon reflection.

I don't know your situation in terms of employment, your marital / relationship status, or where you live. That makes it harder to offer opinions so please take this for what it is. If you are interested in an adult diagnosis for yourself, I think your best bet would be asking the people who just diagnosed your little boy. I'm sure you established some sort of relationship with them and they see you as a loving mother who is seeking the best care for her son. They can likely direct you to a competent specialist or tell you whom to avoid. Again I don't know where you live and I'm not even American so the system might be quite different there. It seems you don't have access to insurance benefits for a private assessment and you do have the expenses of a toddler / baby-to-be. Those are all valid concerns.

Regarding parenting as an autistic woman. I agree with Kortie that there likely aren't any legal reasons to hold an ASD diagnosis against you. That being said, I've been through hell in family court for over 25 years with an adversarial ex-partner who attempted to use my traits against me - even though I wasn't diagnosed for most of those years. He's even gone after me with frivolous suits post-diagnosis. I end up winning everything but still bear the expense of decades of legal turmoil. Child custody and guardianship can be very messy if the other party is unreasonable or wants to drag you down.

I hate to say it in those terms and I don't know anything about your relationship but it's something to be aware of. Where I am the courts are clueless about Autism (both mine and my kids) and essentially, whichever parent can afford the better lawyer will have a field day wreaking havoc on the other.

I feel awful for saying that because I don't want to sound pessimistic. I'm really not. I'm an advocate for adult diagnosis and I'm anti-ableism in all its forms. I'm also an extremely proud single mother who takes no nonsense from the system.

I just wanted to say if you have any questions please let me know.

I'd love to chat.



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27 Apr 2022, 10:11 pm

LisaM1031 wrote:
ASPartOfMe wrote:
LisaM1031 wrote:
because I strongly believe I’m on the spectrum and was just never identified.

As others have said it looks like your son has a good future.

Have you thought about a formal diagnosis for yourself?


I’m a bit hesitant to go this route for a few reasons. First, I hear it’s very expensive. Secondly, a lot of people, even professionals, have no idea what ASD looks like in high functioning adults so I feel like my traits will just be attributed to something else. And I may be a bit paranoid here, but lastly, I don’t know if I want something like that documented and risk being labeled as an unfit mother by the system.

This 18-part series by 'Musings of An Aspie' was written 9 years ago but a lot of it is still relevant.
I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults

Part 5 - ADULT ASD: SELF-DIAGNOSIS OR PROFESSIONAL DIAGNOSIS?
Quote:
Whether you choose to seek a diagnosis or not is a personal decision. As an adult, there’s a good chance you don’t need a diagnosis. You’ve done your research, come to the conclusion that you’re on the spectrum and that’s good enough for you.

This is commonly known as self-diagnosis and when done correctly, it’s largely a well-respected approach in the ASD community. The primary reason? Getting an official diagnosis as an adult is difficult:

Asperger’s Syndrome and autism present differently in adults than in children. Finding someone trained and experienced in adult diagnosis can be challenging.
Many adults face numerous misdiagnoses before getting correctly diagnosed with Asperger’s or autism.
Women in particular are often misdiagnosed because they present differently than male aspies on whom the traditional model is based.

Diagnosis can be expensive and an adult evaluation isn’t covered by most health insurance.
Diagnosis can lead to bias, stigma and/or create practical limitations, like not being able to join the military or having your parental rights questioned.
So how does self-diagnosis work? First, be prepared to do some work. Self-diagnosis isn’t as simple as taking the AQ and deciding you’re an aspie. Screening questionnaires can be a good place to start, but they’re just that: a first step.

As you do your research, keep in mind that not everyone has every symptom. Symptoms can change in severity and presentation over a lifetime, becoming either more or less noticeable with age. In fact, it’s not unusual to find that as you age, one trait (like sensory sensitivities) becomes more manageable while another (like executive dysfunction) increases in severity.

By the time you’ve completed your research, you should have a good idea of whether Asperger’s syndrome or autism is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need (or have a specific reason) to seek out a professional diagnosis, which can be a long and difficult journey.

Even if you choose to pursue a professional diagnosis, you may want to work through the self-discovery process first. Often, getting diagnosed as an adult requires making a solid case for why you think an autism diagnosis fits you.

Weighing Self- vs. Professional Diagnosis

Obtaining a diagnosis as an adult can be very difficult.
Not everyone needs or wants a professional diagnosis.
Self-diagnosis is widely accepted in the autism community when done with diligence.
Self-discovery is a good first step toward professional diagnosis if you choose to pursue it.



Part 6 - ADULT ASD: SEEKING A PROFESSIONAL DIAGNOSIS
Quote:
There are a number of reasons that an adult might want to seek out a diagnosis by a professional:
To become eligible for services
To obtain supports or accommodations at work or school
To increase the likelihood that therapy or counseling takes aspie/ASD traits into account
For peace of mind and/or validation of a self-diagnosis


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27 Apr 2022, 10:44 pm

My daughter was diagnosed with moderate autism at 5 and she presents as mild/moderate as a teenager.

Just underlining the importance of speech therapy. It's been the only intervention which has been worth the money. Your son might be too old for ABA and if you do introduce that its better either you or your partner deliver it.



LisaM1031
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27 Apr 2022, 11:32 pm

cyberdad wrote:
My daughter was diagnosed with moderate autism at 5 and she presents as mild/moderate as a teenager.

Just underlining the importance of speech therapy. It's been the only intervention which has been worth the money. Your son might be too old for ABA and if you do introduce that its better either you or your partner deliver it.


I’ve actually had him in speech therapy since last fall since he was diagnosed with a speech delay. They didn’t identify the ASD at that evaluation since they weren’t really looking for it. My son is only 2.5 so he’s not too old for ABA. I will proceed with caution with this though since I’ve heard mixed things about it.



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28 Apr 2022, 1:31 am

LisaM1031 wrote:
My son is only 2.5 so he’s not too old for ABA. I will proceed with caution with this though since I’ve heard mixed things about it.


So the Lovaas method for ABA prescribes 40 hours per week of intensive therapy. This is (in my view) excessive and counter-productive and may have unknown psychological trauma on the child. My wife and I trained as ABA therapists and spent 2hrs per day spread over 1hr in the morning and 1hr in the afternoon and 1hr of speech therapy each fortnight.

But that's what we did for our daughter (we don't know if it would improved if we increased hours or started at an earlier age (she was 5 when we started).



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28 Apr 2022, 11:14 am

I doubt the pure Lovaas method, Discrete Trial Training, is used today.

How much language does your son have at present?



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28 Apr 2022, 5:36 pm

I can understand your hesitance to seek a formal diagnosis. A few observations:

- If you were diagnosed, who would you have to tell? Anyone?
_-_-_Unless, perhaps, you have some extremely sensitive employment situation.

- Your friends and family already think you're weird (at least, mine did).
_-_-_My family was notably disinterested in the new "label".
_-_-_Thanks to the Pandemic I really haven't explored friends' reactions, yet.

- If you need official accommodations then you'd likely need an official diagnosis

- I suspect a diagnosis is less likely to cause someone trouble the older they are.
_-_-_I was diagnosed at age 64. For me it is mostly personal trivia.
_-_-_Your age is young enough I don't know whether it would be an issue.

- If you decide to pursue a diagnosis, first check what your insurance will cover.
_-_-_And follow the insurance company's process carefully.
_-_-_And try to stay within their network of providers.
_-_-_And don't expect them to know what providers can do the diagnosis.

- I suspect Adult Autism Assessments are not too common.
_-_-_When asked, my insurance company was immediately willing to help.
_-_-_When asked, my insurance company was clueless on how to help.

I used this website to search for a psychologist to do my assessment:

_-_-_https://www.findapsychologist.org

I did not see any providers listed whose webpage explicitly said they did Adult Autism Assessments. I looked for psychologists in my area who worked with Autism and with patients my age. Then I called their practice to see if they could do an Adult Autism Assessments. (Oh, also check whether they take your insurance.)

P.S. There is a process they follow doing the assessment. It is, predictably, geared for children. The psychologist seemed a little self-conscious about that but I thought it was kind of fun. My best guess is the process would likely work just as well with adults, just be more amusing.


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cyberdad
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28 Apr 2022, 5:48 pm

kraftiekortie wrote:
I doubt the pure Lovaas method, Discrete Trial Training, is used today.


Actually paediatric psychologists still recommend it.



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30 Apr 2022, 7:08 am

cyberdad wrote:
kraftiekortie wrote:
I doubt the pure Lovaas method, Discrete Trial Training, is used today.


Actually paediatric psychologists still recommend it.


Unfortunately.

I do not recommend ABA in any amount. The closest I'd come is recommending an eclectic strategy that draws some ideas from ABA, but tempered by non-ABA strategies as well.

In particular, the best parts of ABA are the ways they systematically break down complex routines into clear, simple steps, and the way they recommend keeping records of the situations that lead to misbehavior.

However, the misbehavior itself is usually best dealt with in ways other than operant conditioning, especially for autistic kids since most misbehavior by autistics stems from distress or misunderstanding. And in terms of teaching useful skills, ABA only works for very rote, repetitive skills, like getting dressed, and not for complex, adaptable, situation-variable skills that require the user connect their actions with internal states, like communication and social interaction. You can't get real communication and connection by training rote sequences. The kids I've known who have learnt language skills through ABA generally don't communicate well, instead they say what the adult wants them to say when given an appropriate prompt.

So, what do I recommend instead? For communication, one of the best strategies I've seen is to respond to potentially communicative behaviors as if they're definitely communication. For example, if a child reaches for something, they could be trying and failing to grab it (not communicative), or they could be indicating to an observer that they want it (communicative). If you respond based on the assumption that it's communicative (eg saying "oh, are you telling me you want a cookie? Well, I suppose you can have one. Here.") then the child learns that their actions can elicit relevant responses from others.

Another strategy is aided language stimulation. This involves taking an alternative or augmentative communication system (eg sign language, picture cards, a talker, etc) and using that method along with speech to talk to the child, in the hopes that the child will make the connection and use the AAC method to respond. If they use the AAC method, then of course you respond to it as a communicative act, even if you're pretty sure they were just playing with pressing random buttons or accidentally brushed against the picture card or something.

For social skills, at the early stages, it's basically about setting up situations where other people will scaffold social interaction by being really optimal social partners. This means being highly responsive to the child's behavior and imitating them a lot. Again, the idea is to teach them that their actions can affect how others will act in response to them.

Once they've got some verbal skills, one of the best methods of teaching social skills is to explain social concepts to them, especially using visual imagery. For example, studies have shown that asking verbal autistic kids to imagine that a person has a camera in their head taking pictures of what they see helps them pass the Sally-Anne test (a test where they need to infer that Sally doesn't know about an event they know happened, because Sally was out of the room at the time).

It's also valuable to teach self-advocacy and assertiveness, more so than conventional social scripts, because it's a) less likely to lead them to feeling like they have to follow a norm that isn't working for them, and b) applicable to pretty much any social situation they might struggle in. This means teaching them about their autism diagnosis and what it means for them, and teaching them to introspect about their own feelings and needs, and teaching them how to communicate their needs respectfully (eg making "I" statements, listening to other people's needs and seeking solutions that meet both parties' needs, etc).

It also means recognizing that some people are cooperative social partners and some people are not, and if negotiation breaks down, sometimes you need to resort to setting firm boundaries and holding to them. In this situation, being a broken record (saying a rehearsed one-liner that clearly and respectfully states a boundary, instead of responding to their argument) and making use of tools available to end an interaction prematurely (eg physically leaving, blocking someone on social media or text messages, hanging up the phone, etc) tends to be the best approach. If those strategies fail, or the other person is in a position of power over them, seeking help from a relevant authority figure (someone higher on the org chart for someone not doing their job properly, police if the person is doing something illegal, a teacher if a classmate is breaking school rules, etc) or someone who can advocate on their behalf with authority figures (eg a parent for school issues, a lawyer for legal situations, etc) is a good idea.