Parenting an Asperger's type 11 year old

amother

Wed, Jun 05 2019, 10:08 am

When my son was 5, he was very aggressive in school and we had him evaluated and we were told he has ADHD. We did not medicate, but somehow he settled down over the years. However, now I'm feeling he's more Asperger's (I know it's really high functioning autism, but that specific type) - he's highly intelligent, but intense and socially awkward. He used invite other kids, try to fit in, etc. Since he was a child, he always had special almost obsessive interests (but changes every once in a while to something new that's captured him) that he seems to think and talk about almost constantly. There used to be a geshmak/excitement to how he talked, expressed himself and now, within the past 2 years that is absent. He also developed a monotone and doesn't express much feeling anymore. Currently, he relates to others in school only based on his current interest and nothing else and doesn't invite anyone over anymore. He spends a lot of time on the computer following his interest - constantly wants more time to pursue it. His relationship with younger siblings devolved into basically telling them to stop making noise and correcting their grammar. He has never been into sports, but had played outside in the past (running, on swings, etc), but now does not do that at all anymore. He does not want to go to camp at all this summer, and I told him he has to go for a few weeks. I am concerned about his current behavior and not sure how to parent him in a way that will help him feel good about himself (& his interest, which I want to encourage, but not allow it to take over his whole life), but also help him become more aware of people and sensitive to others around him. To those who have children who are High Functioning Autistic, does this sound to you like this may be what it is? How do you parent your children and encourage them/help them with social skills if they are basically in their own world, not really bothering anyone too much, but not relating to people around them? How would you come up with appropriate amount of computer time for that special interest? Any ideas of resources for me? Should I be seeing a therapist to get a good idea how to deal with him - who'd be most appropriate? He is resistant to seeing a therapist for himself as doesn't see anything wrong. What is best role I can take as his parent?

imasinger

Wed, Jun 05 2019, 10:25 am

Yes this absolutely sounds like HFA. Start by getting it formally diagnosed by a neurologist or a developmental pediatrician. Then, you can get the social skills and ABA and possibly speech help that will be effective.

amother

Wed, Jun 05 2019, 10:35 am

imasinger wrote:

Thank you imasinger, I really appreciate it. A few questions: I imagine he will be resistant to going to a neurologist as he doesn't think there's anything wrong - what would be the best way to bring it up with him? Same with social skills - he doesn't see a need for it, speech help - he feels ok with his monotone - he thinks it makes him different and special. For ABA, I think of it more for specific problem behaviors, but I'm really trying to encourage a new type of behavior - relating to people and not be in own bubble (not really stamp out aggression or whatever) - could ABA work for that?

amother

Yellow

Wed, Jun 05 2019, 11:22 am

I respectfully disagree with seeing a neurologist - the ones I've worked with in my professional life almost without exception are terrible diagnostically at seeing the nuances between ADHD and HFA. A developmental pediatrician would be much more helpful IMO. You could just tell you child that you are going to a different type of pediatrician, which is true. I don't think ABA works for the higher functioning children. But speech therapy could be very helpful as well as a social skills group geared toward children on the spectrum.

P.S. your child sounds more like he would have been diagnosed in the past with PDD-NOS than Aspergers - you will have to work with the doctor to gauge whether he has any interest in socializing. At this point it may be more about teaching him the social skills he would need to function at school, and work in the future, but camp and playdates maybe should be off the radar for now.

amother

Wed, Jun 05 2019, 11:38 am

amother [ Yellow ] wrote:

Thank you so much for your reply. I really appreciate it. Regarding camp, I feel it's important for him to get some social interaction even if it's for a few weeks of day camp, but am feeling conflicted as he doesn't want to go, but if he's at home all day, he'll want to basically be on the computer/reading most of the day on his special interest/s. Is it bad to "force" him if I feel it is for his good?

Are you aware of any social skills groups toward very intelligent high functioning autistic kids at that age level that have Jewish kids? (I'm in NJ). Would it be appropriate/helpful to take him if he doesn't want to go? In general, he seems to be ready to leave well enough alone, but I'm concerned he is missing out on his social skill development. Same for speech therapy - could it work for the "monotone" - and should I only be doing it if he is ready and wants to (If I ask him, he'll probably say he doesn't want to go) or is it something I should be "forcing" on him?

aricelli

Wed, Jun 05 2019, 11:44 am

amother [ Yellow ] wrote:

Now you confused me! My son was never evaluated but probably has hfa. He is doing awesome with the therapies we’re doing and I dont want to change anything. For personal reasons I want to take him for an eval this summer. I thought a neuropsych was our best bet? Should I rather look into the dev. Ped? So confusing...

aricelli

Wed, Jun 05 2019, 11:45 am

OP- I’m doing floortime with my son and he’s growing emotionally and socially
Eta- he’s very resistant to therapies and I have stopped nearly all as they were working against him. He loves floortime because like he says: its not therapy, its playing! We are working on goals in a fun way

FranticFrummie

Wed, Jun 05 2019, 11:50 am

As soon as you get a diagnosis, ask your local hospital about parenting classes. There are special classes for parents of kids with certain issues.

I took a class at Seattle Children's for parents of kids with severe anxiety, and I learned a lot. You'll also feel less alone, and more empowered in your parenting decisions.

amother

Yellow

Wed, Jun 05 2019, 11:57 am

amother [ OP ] wrote:

Is there a specialty camp he'd be more interested in? What about a camp that has experience with children like him? I wouldn't send to any old day camp. I'm sorry I don't know of resources in NJ. And yes I would require the speech therapy, rewarded/incentivized to encourage his participation.

AriCelli - neuropsych is a good idea. OP said neurologist - different type of professional - that I have less faith in when comes to HFA.

seeker

Wed, Jun 05 2019, 12:00 pm

I'm no doctor but frankly he sounds depressed. Your description of how he was in the past is definitely consistent with Asperger's. But that he previously showed excitement and now doesn't, and previously played outside and now doesn't, this worries me.

Is his special interest the kind of thing he could join a group for?

amother

Wed, Jun 05 2019, 12:09 pm

amother [ Yellow ] wrote:

Thanks, he probably would be interested in a specialty camp of his interest, but the ones around are not Jewish/kosher and not ready to send him there. I'm not really familiar with camps that have experience with kids like him. There is 1 kid going to the day camp who is his friend at least on some level (the other kid who is not so intense, but a friendly, nice kid, invites him to his house or himself over once in a while & they share the special interest), so I'm hoping that would be a kind of buffer. It is only also for a few weeks - there are still many more weeks of the summer to figure out how to occupy him in a good way.

I definitely feel I need guidance in being his parent. Any ideas to encourage more relationship with siblings (should this even be a goal on my horizon?) - is it appropriate to incentivize most things with him - like if he plays a game/runs a race together/reads a story to young siblings, he can have computer time for that amount of time - am I accomplishing anything or is it just making it a like a chore that he is only doing to get the reward so not really worth much? When he corrects siblings grammar or tells them to be quiet, I mostly take away computer time - is that an appropriate consequence for him?

amother

Wed, Jun 05 2019, 12:15 pm

seeker wrote:

Thank you, I wonder also, because he definitely used to display excitement, but is this just something that as kids grow up, they just lose that fresh excitement? He definitely is still very occupied with his special interest, but he has more of a bland type of tone in general. He could join possibly join a group (not Jewish most likely) - I will look into that - thanks for that idea.

imasinger

Wed, Jun 05 2019, 12:49 pm

OP, I put your questions to my DD, who is an expert in the field. Here is her response (sorry the chart didn't come out well here, if you pm me or make an anonymous email address like "wanna know more@gmail", I can send it to you in a better form):

amother
OP wrote:

A few questions: I imagine he will be resistant to going to a neurologist as he doesn't think there's anything wrong - what would be the best way to bring it up with him?

Doing something fun associated with it, or after also, will sweeten the deal. Think: “Do you want a day off from school?”

True, he might bring it up, but he might not. (could be he won’t even put up such a fuss) Just tell him you have an appointment with a specialist called a neurologist. Lots of people go to all different types of doctors. You can give some examples of specialists you’ve gone to. If he still asks for an explanation, say something like:

“Sometimes kids go to see doctors for all kinds of things. This doctor is going to be much more enjoyable than other doctors, and is going to just talk and do activities instead of regular doctor. It doesn’t mean there’s anything wrong with you”. Tell him how long the appointment will be. And do something nice together afterwards. It isn’t really a choice… Things that are non-negotiable tend to happen without a major fuss (like, no turning on lights on Shabbos)

amother
OP wrote:

Same with social skills - he doesn't see a need for it, speech help - he feels ok with his monotone - he thinks it makes him different and special.

So, don’t call it “social skills”, call it “clubs” or whatever. We call our social skills groups “Sports Clubs” and “game room night”.

He might not see anything wrong with him, but if you tell him it’s something he can try out and see if he hates it, or if it’s not so terrible (and maybe even take him out to ice cream or something for trying it out for a week), then you can work through problems once he has tried it. Half the problem is seeing that it isn’t so bad after all. But don’t tell him he can stop unless you intend to allow that. Prep the therapist beforehand for this. Part of successful therapy is building a relationship. A good therapist will start out therapy with fun activities, such as a science experiment, a project, etc that might interest him instead of saying “alright, we’re here today to work on your monotone”. I’d hate hearing that too…

amother
OP wrote:

For ABA, I think of it more for specific problem behaviors, but I'm really trying to encourage a new type of behavior - relating to people and not be in own bubble (not really stamp out aggression or whatever) - could ABA work for that?

Of course!! In our agency, we do it every day. There’s all kinds of great curricula to work on these skills. ABA targets the categories of the autism diagnosis: Social, communication, and behavior. Each of these have different levels. We address them all. I attached my DSM-5 “at a glance” explanation of the autism diagnosis. Any topic discussed here, or anything that happens because of the root cause listed here, can be targeted in ABA.

Be sure to get a competent agency and a competent BCBA who actually understands Asperger’s type kids. Some people out there are clueless, which is one of my biggest pet peeves! They ruin the name of ABA for those of us who actually know what we are talking about.

Good luck!

Quote:

DSM Chart – simplified what to refer to in goals (need to copy and paste from the diagnostic criteria; this is just a guide “at a glance”)
Domain Header
Fall under domain of following headers
Social communication

Abnormal social approach: conversation, sharing interests, emotions, affect, initiate, respond
Nonverbal communication deficit (including eye contact, body language, facial expressions)
Maintain and understand relationships (adjusting behaviors, play, making friends, not interested in friends)

Repetitive behaviors or interests

Stereotypy with objects or speech (echolalia included)
Insists on same routine or patterns (can’t make changes, transition, rigid thinking, rigid eating, etc)
Perseveration or fixation on specific things
Sensitive to sensory input or wanting weird sensations (wants specific sounds, temperatures, fascinated with lights, etc)

Symptoms seen early in life

Note: symptoms may become fully manifest when the expectations exceed abilities
Can’t function in social situations and other areas of functioning

-----
Can’t explain above deficits by a different co-occuring disorder

-----

Make a note of if there is intellectual, medical, or language impairment.
Support level required
Domain: social communication
Domain: Restricted, repetitive behaviors
Level 1: Very substantial
Can’t function in social interactions. Like, isn’t intelligible in speech or when someone makes a social approach, only responds to very direct and simple communication.
Totally inflexible. Cannot cope with change, or other repetitive behaviors that interfere from functioning. Can’t shift focus or action without major distress (tantrum, etc).
Level 2: Substantial
Even with some support the deficits are apparent. Limited initiation, weird responses to other people’s overtures. Can’t get over their own narrow special interests in their conversations with others. Has weird nonverbal communication
Inflexible and can’t deal with change. Repetitive behaviors are apparent to an outside observer. Can’t shift focus or action without distress (frustration, etc).
Level 3: Requiring support
If there is no support, deficits are apparent. Difficulty initiating and weird responses when someone else engages them (verbal, nonverbal). Not interested in social interactions; for example, can’t converse normally and cannot make friends
Inflexibility interferes with functioning in at least one context. Difficulty transitioning. Disorganized and can’t plan, so independence is difficult to attain.
Autism Spectrum Disorder 299.00 (F84.0)
Diagnostic Criteria
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity:
Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)
Table 2 Severity levels for autism spectrum disorder
Severity level
Social communication
Restricted, repetitive behaviors
Level 3
"Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2
"Requiring substantial support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1
"Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

amother

Wed, Jun 05 2019, 2:09 pm

Thank you so much imasinger!

imasinger

Wed, Jun 05 2019, 2:46 pm

You're welcome! If you're worried about finding a good diagnostician, you can try calling a good BCBA. They can suggest referrals.

Two other bits worth mentioning, as the mother of a DS almost 13 with PDD-NOS (HFA).

1. My DD's agency in Lakewood services clients all over NJ. Don't assume that if you don't know of a BCBA or group in your immediate vicinity that you don't have options.

2. Last summer, my DS went to a regular day camp, but with the support of therapists from an ABA agency. The therapist stayed in the background so that nobody would know who he was "there for", he was just another adult around. In a very low key way, he helped my DS navigate any situations he found challenging. And after camp, he helped my DS talk about anything that came up.

In short, there are ways to get what you need.

Hatzlacha!

amother

Crimson

Wed, May 13 2020, 12:14 pm

For those who don't like rhyming poems: please skip!

Oh how my heart bleeds
For my dear young son
No matter how hard he tries
He's heard by no one

Somehow he's the boy
To hurt others by mistake
To say the wrong words
His things always break

Asperger's and ADD
A combination that should be mild
How it alters all of life
Leaves lots to be desired

He has only one true friend
Who lives so far away
Why must his life be empty
With no one with whom to play

Why are people so cruel
From adults down to kids
With zero feeling or sensitivity
For another's challenges?

So horrible to tease
Another human being
What comes to you with ease
Has another struggling

He's such a sweet cute boy
Innocent and tame
Tries to make jokes
That turn out so lame

Each bit of time
He comes up with something new
From the latest gadgets
Do card throwers interest you?

Learning is haphazard
In addition to being hard
His room is a hazard
How's a racetrack in the yard?

Attempts to socialize
In that he does fail
Is always the follower
At the end of the trail

Kids tease him subtly
Thinking he doesn't understand
His tears speak volumes
Of his wisdom which is grand

His struggles they are many
From social to academics
But his attributes are there too
They're just lost in the mix

I pray that one day
He will be successful
He will show the world
To fight challenges which were stressful

That he will overcome
The strife deep within
Which cause turmoil
Make his brightness dim

That brightness is so huge
Though clouded, now is gloom
Just like his life is being lived
Alone in his own room

How can I help him
How can a mother nurture?
A question I must answer
To bring him a better future

amother

Cerulean

Wed, May 13 2020, 4:10 pm

Sounds like HFA, for an evaluation I would recommend to have a clinical psychologist do a complete evaluation. It's expensive but worth every penny.

You'll be able to find his strengths and weaknesses so you can help him adequately.

My experience: let him be who he is, if he is obsessive with science or computers, foster it! Be proud of his strengths and these laser focus interests can even be a future career.

Social skills group is a good idea for those soft skills.

amother

Aubergine

Wed, May 13 2020, 6:24 pm

Have you ever tried playing with him. Real fun laughing, letting go, runing, tag etc..this helped me with my child.

amother

Crimson

Wed, May 13 2020, 7:44 pm

Thank you for the suggestions.
I do all that already. its really painful to see him with other kids

powerofplay

Wed, May 13 2020, 8:07 pm

Can you join him in his area of interest ? Talk to him about it and expand upon it ? Try to see his joy in it and ask him to “teach “ him things about it . Engage in lots of back and forth conversations about any topic that he’s willing to engage in . Encourage different kinds of play or conversations/ jokes/ riddles with sibs. Sometimes he’s telling jokes and sometimes they are . This will take a lot of practice to turn one person activities into two- way activities . Sounds like floortime techniques would be good at loosening him up a little bit , helping him see perspectives of another . Main goal : To experience joy of interaction ... the pleasureable interactions will become rewarding to him but will take time. Are you near Lakewood?