Does my kid have ASD??

amother

Babypink

Wed, Dec 14 2016, 9:51 pm

Ok, I know that noone here can really answer that Smile

Basically, I've been reading a lot of posts here lately that describe situations similar to my 9 year old child. These mothers all report that their child has some form of ASD. I brought up my concerns to my pediatrician, (I've brought up concerns to him in the past and he never mentioned ASD), and after describing in detail my child's difficulties, and my concerns, he recommended that I see a developmental ped.
The wait month is 11 months. What am I supposed to do between now and then??? I've taken my child to more than one therapist to work on social skills. Some of them helped a lot, some of them didn't. None of them ever brought up ASD.
11 months is such a long time to wait to figure out how to help my child, so much precious time will be wasted instead of doing something to make progress!
Any advice or insight is appreciated!

seeker

Thu, Dec 15 2016, 2:28 am

Keep looking for a different doctor. 11 months is not normal. Try a neurologist maybe.

amother

Pewter

Thu, Dec 15 2016, 2:32 am

Keep doing what you were doing right now; working on individual skills and exploring all avenues. And make that appointment!

I have the same situation with my son and my appointment with a developmental pediatrician is finally getting closer! Over here there is "only" an 8 month wait. There is a huge demand for developmental pediatricians that are decent and accept insurance.

MitzadSheini

Thu, Dec 15 2016, 2:49 am

I think there is very often quite a long delay between suspecting something is wrong and receiving a diagnosis of autism. Having gone through this twice I think one of the good things about this is that because autism very hard diagnosis to swallow, it is as if Hashem let's us know gradually, to ease the shock of it. We have suspicions, doubts and so on over a number of months or even years. Specialists are unsure, unclear, noncommittal. Eventually if/ when the diagnosis comes it is almost a relief to hear it. Whereas if we found out straight away it would be so much more difficult to handle. Obviously some people do find out more quickly and that is the best thing for them. But it seems very commonly to be a slow process.

None of this means your child actually has ASD of course. I write this only that you should keep doing what you are doing and not worry yourself about the delay in getting the evaluation. You will know what you need to know exactly when you need to know it.

imasinger

Thu, Dec 15 2016, 5:03 am

I remember how long that first wait seemed.

There was a part of me that illogically equated diagnosis with solution.

After all, when one of my kids ran a fever and pulled at the ears, I could take them in to the pediatrician, get confirmation that it was an ear infection, get some antibiotic from the pharmacy, and, within 24-48 hours, my kid would be better.

But a confirmed diagnosis of ASD -- or other similarly lifelong condition -- doesn't mean that within a short time, the problem will disappear.

The treatments that help often take years, and tons of work for the parent and the child. And different treatments seem to work for different people. There are no magic bullets.

All the confirmed diagnosis did was make it easier to get insurance for therapies.

Sometimes.

In the meantime, if you have the funds, you may be able to look into ABA or OT before next year.

Also, there is helpful reading; there is parent training; and, if you want to post about the concerns you have, there may be things that help regardless of the exact diagnosis.

Here are some good books:

The Out of Sync Child, by Carol Kranowitz
Transforming the Difficult Child: The Nurtured Heart Approach, by Howard Glasser
The Social Thinking books, by Michelle Garcia Winner
Quirky Kids, by Perri Klass

Hope this helps!

amother

Babypink

Thu, Dec 15 2016, 12:44 pm

Thank you so much for your replies. Mitzadsheini you're so right! and thank you for the book list imasinger. I have looked at some of those books but never finished from cover to cover. So while I'm waiting if I read those books, I still may be able to help my child even if there is no professional providing treatment?
We did do OT for a bit, it was very helpful. I will look into starting it up again.
Any other responses welcome!!

FranticFrummie

Thu, Dec 15 2016, 4:00 pm

Getting in to see a specialist is so hard! The trick is you have to call in every single week, and ask to be on the standby list in case of a cancellation. Set your alarm for every Monday morning, call early and call often! After a while, they may just squeeze you in to shut you up. Wink

Seriously, I've been able to cut down wait times to a matter of weeks or just a month, when I was told it would be 8 to 11 months before I could get DD in.

In the meantime, Google for ASD checklists. There are questionnaires out there that can be really helpful. You can pinpoint issues that you recognize, print them out, and bring them to your appointment. You'll also have a better idea of what the doctors will be looking for.

amother

Ecru

Thu, Dec 15 2016, 6:23 pm

Agree with ff- call every week to see if there's a cancellation but like the other mothers said, diagnosis doesn't mean cure. Keep getting your child social skills intervention and ot and if you feel necessary, aba as well (I think it's and last resort but for some kids it definitely helps ). When the diagnosis comes in you'll be able to use the recommendation of the developmental pediatrician to target the most important skills but there's lots of work to do for the next 11 months that you'll be able to come armed with reports and more info which will allow the evaluation to be more accurate.
Hatzlocha!!

amother

Powderblue

Thu, Dec 15 2016, 6:47 pm

I am going through this with my ds,9. I had heard that the wait was at least four months. I decided to go private. I was recommended to go to a psychiatrist- I actually met the nurse practitioner. Their specialty is on diagnosing condition such as ASD. It was a one time fee for the consultation and I receive my diagnosis yesterday. It's true it was quite a hefty fee, but it was worthwhile to know that we can begin assisting our child for months earlier for that cost. Hopefully with all insurance straightened out etc. we can start getting some treatment plan and therapies within 2 to 4 weeks.

amother

Babypink

Thu, Dec 15 2016, 10:00 pm

Thank you for all of that advice. Powderblue do you mind if I ask how much your consultation cost? The problem with waiting so long is that we aren't doing anything that's really helping, and that's why I'm wondering if getting a diagnosis will lead us to getting the right help. It's true that the diagnosis won't lead to the cure, but I'm assuming someone will direct me toward the right form of help to get.
On a separate note, would anyone mind sharing, if you got this diagnosis at this point in childhood, did you share it with the school? How did you present it to them? Did the teachers change their view on the child? (For better or for worse)?

amother

Seagreen

Thu, Dec 15 2016, 10:10 pm

This is a bit different then my situation bec my ds has ADHD. And was evaluated by a neuropsychologist. So you might want to call an organization that does referral s and find someone that you can pay for and get someone good. But it will also take some time. A professional is usually booked. It took me 3 months for someone I paid cash for. This whole assessment and a written diagnosis cost me 4,000$ and I know this is on the cheap side.

amother

Babypink

Thu, Dec 15 2016, 10:27 pm

Thank you so much for that information. And FF I googled ASD checklist, it was a huge help, thank you!

amother

Powderblue

Thu, Dec 15 2016, 10:44 pm

amother wrote:

The consultation with nurse practitioner was 350$. (With the dr was 450$ but I heard she was more pleasant.)
I spoke to the school social worker a few times and she met with my son. She told us about this practice and she also told us which therapy agency to go thru for services. This is an agency that other boys in the school are using and the school has seen good results from them.
I am not telling anyone about the diagnosis for now aside for those working with him ( not even my parents or siblings) I don't need him to carry a label for ever. Yes he ll always be a little different but I hope that we can still get him the help he needs so that he can be the best "him" possible ... its not necessary to have ppl look at him as if he had some disability... I did tell his teachers that we are working on getting him professional help to aid him in his social awareness and behavior in class, so that they understand that we are doing our part. Once we have the therapies in place the case manager will be in touch with his teachers

amother

Babypink

Thu, Dec 15 2016, 11:11 pm

Thank you for sharing that information. My school doesn't have supports like that (social worker, psychologist etc), They just have teachers telling me that my kid needs help Smile

I also worry about "labeling" especially bec this is an age where kids understand these labels. So you're going to keep him in the same school and just get the help outside of school hours?

amother

Powderblue

Thu, Dec 15 2016, 11:54 pm

He will stay in school, but will be pulled out of class once a day for therapy- language, social etc prob and he will also have "a recess rebbi" who will watch out for him recess time and try to incorporate him in games etc... he ll also attend social skills workshops in a group setting after hours

amother

Pewter

Fri, Dec 16 2016, 12:06 am

amother wrote:

The consultation with nurse practitioner was 350$. (With the dr was 450$ but I heard she was more pleasant.)

Wow! I was quoted $1,500 for a private evaluation and consultation. I opted to wait the 8 months instead and be covered with insurance. Thank G-d, my son has made huge strides during this wait.

amother

Powderblue

Fri, Dec 16 2016, 12:28 am

amother wrote:

Wow! I was quoted $1,500 for a private evaluation and consultation. I opted to wait the 8 months instead and be covered with insurance. Thank G-d, my son has made huge strides during this wait.

Just curious- what were you doing with him that allowed him to make "huge strides" while you waited?

Chana Miriam S

Fri, Dec 16 2016, 1:54 am

amother wrote:

Ok, I know that noone here can really answer that Smile

Start calling once a week for any cancellations they might have. Assuming you are in the USA, I find this so ironic. I am pretty sure long waits are not unique to socialized medicine.

Chana Miriam S

Fri, Dec 16 2016, 2:00 am

amother wrote:

Thank you for sharing that information. My school doesn't have supports like that (social worker, psychologist etc), They just have teachers telling me that my kid needs help Smile

I also worry about "labeling" especially bec this is an age where kids understand these labels. So you're going to keep him in the same school and just get the help outside of school hours?

Labelling is really not a bad thing. Where I live, it means you can get services.

Also, labelling is an opportunity to teach the classmates about asd and how to support their peer and appreciate him for his gifts and tolerate his quirks.

I have a 20 year old on the asd. He is. Try high functioning and spent last year in Israel in yeshiva. He is applying to community college to do architectural technology.

It was a lot of advocating and a lot of meetings to get him here but it was totally worth it.

imasinger

Fri, Dec 16 2016, 7:02 am

Here's a good and thorough piece about labeling. The bolded is the reason we share openly with schools.

http://www.myaspergerschild.co.....l?m=1

Quote:

Receiving a diagnosis of Asperger’s (AS) or High Functioning Autism (HFA) can be a mixed blessing. Some individuals are happy with self-diagnosis, while others prefer to get a “formal” diagnosis so they can know for sure whether or not they have an autism spectrum disorder.

If your child receives a formal diagnosis of AS or HFA, there are going to be a number of benefits as well as difficulties associated with getting “the label.” In this post, we will look at the advantages and disadvantages of getting labeled with a developmental disorder.

First, let’s look at some of the disadvantages of labeling:

1. A label is simply a cognitive shortcut (I.e., a term used to represent a series of characteristics), but it is useful only if people are mindful of the fact that they are using it as a shortcut. When people lose that mindfulness, a label becomes a stereotype.

2. All kids have some problematic behaviors. Labels can exaggerate a child’s actions in the eyes of parents, teachers, and others. Adults may overreact to the behavior of a labeled child that would be tolerated in another child.

3. Children on the autism spectrum can’t receive special education services until they are labeled. In many cases, the intervention comes too late. The need to label children before help arrives undermines a preventive approach to the mild learning problems associated with AS and HFA.

4. Labeling a child gives others the ability to “pigeonhole” or make assumptions about him or her based on the diagnosis, or their understanding of the diagnosis. This can lead people to make decisions and judgments about the child based on the diagnosis rather than on the needs and characteristics of the child.

5. Labels perpetuate the notion that children with AS and HFA are qualitatively different from their peers. This is not always true. Children on the high end of the autism spectrum go through most of the same developmental stages as other kids, although sometimes at a slower rate.

6. Labels shape the expectations of parents, teachers, peers, and others. Imagine that you are a teacher. What would your reaction be if the principal informed you that the new child in your class has an Autism Spectrum Disorder (ASD)? Research on teacher expectations has demonstrated that what teachers believe about student capability is directly related to student achievement. Thus, if a teacher lowers her expectations of a student on the autism spectrum, statistically speaking, that student will be less likely to perform at the level he or she could without the ASD label.

7. People may confuse the child with the label. When a child is placed in a particular category, people who know some of the traits of that category may attribute ALL known traits to the child. This is called stereotyping. Stereotypes hurt children when people rationalize his or her behavioral problems by citing traits of the label.

8. Research shows that children and teens known to have AS and HFA are more vulnerable to stigma and discrimination – especially from peers (e.g., teasing, bullying, peer-rejection).

Next, we will look at some of the advantages of labeling:

1. A label (I.e., a formal diagnosis) provides a framework within which to understand the disorder. By noticing which symptoms seem to show up together, then noticing which cluster of symptoms a particular child seems to fall into, treatment decisions can be informed by what has - or has not - worked for other children with similar clusters of symptoms.

2. By labeling the disorder, it is easier to address any problems that are associated with it, and allows parents and teachers the opportunity to maximize the positive aspects of the disorder. Young people on the autism spectrum often have a unique ability to focus, and to catalogue detailed information about their areas of interest. In many cases, these talents can be put to very positive, constructive uses. One only needs to look at the celebrities who some suggest may qualify - or may have qualified - for an ASD diagnosis to realize what talents can be associated with what is called a “disorder.”

3. Children and teens on the spectrum have known they face certain difficulties for a long time – without being able to explain why! A label can be a relief because it allows them to learn about their disorder, to understand why they find some things so difficult, and indeed, why they are very good at some things.

4. Diagnoses can serve as a sort of cognitive shortcut. Rather than list all of a child’s symptoms individually, therapists can name the cluster and understand the child more quickly, speeding communication.

5. For moms and dads, the diagnosis and label usually provides them with a sense of relief. Many parents say that they have known that something was “wrong,” but felt that they could not get “the problem” properly identified. When such issues are identified and labeled, parents are better able to understand the nature of the challenges and how to address them.

6. Having a diagnosis is the key to getting autism-specific support (I.e., support that is provided by people who understand AS and HFA, as well as the specific difficulties associated with it).

7. Having received a diagnosis, a youngster on the autism spectrum can tell other family members, friends, and classmates about it (if she wants to), perhaps giving them some information about the disorder. This helps others to understand autism. When the people who are close to the AS or HFA child understand that there is a reason for her difficulties, it's much easier for them to empathize with her and offer support.

8. If a child has AS or HFA, but doesn’t know it, it affects him anyway. If the child does know, he can learn to minimize the negative impact – and leverage the positive!

9. Knowing about AS or HFA gives the child or teen an explanation – not an excuse – for why her life has taken the twists and turns that it has.

10. Labeling providing parents and teachers with a way to learn about the youngster’s specific behavioral difficulties. By learning about the disorder, people can better understand its implications so that parental, teacher, and community expectations of the child are realistic, reasonable, and do not require him to meet standards that are outside his range of abilities.

11. Some adults on the autism spectrum choose to get a diagnosis for reasons connected to work (e.g., to get certain accommodations). Perhaps they are having problems finding a job, they have a job but are worried they will lose it, or they feel misunderstood by their employer or fellow employees.

12. Sometimes, young people on the autism spectrum have been misdiagnosed with mental health problems (e.g., schizophrenia). This may mean they have received inappropriate treatment or services. But with a formal diagnosis of AS or HFA, this can be rectified. Also, some young people do indeed have mental health problems, and these can be better addressed once their spectrum disorder has been identified.

13. When young people are given the diagnosis of AS or HFA, it can validate their experiences by letting them know that others have similar experiences.

14. Without the knowledge that you have AS or HFA, you are likely to fill that void with other, more damaging explanations (e.g., “I’m a failure, weird, disappointment, not living up to my potential, etc.”).

15. Perhaps most importantly, when an individual knows exactly what he or she is dealing with (in this case, an autism spectrum disorder), accommodations specific to the disorder can be pursued. For example:

a. an older teen or young adult can use the information to plot a course through college--
take classes part time to account for executive functioning/organizational challenges
request reasonable accommodations at school or at work
choose to live at home to minimize the number of changes all at once
prepare for a career that matches interests and abilities
join interest-based groups so that socializing has a purpose
request a single room to decrease social and sensory demands

b. a middle-aged or older adult can use the information to--
work differently with helping professionals with an emphasis on concrete coaching help
renew and/or repair relationships
improve on relationships
pursue better matches
find people who share similar interests
find others on the spectrum with whom to compare notes
do a life review to understand why careers and relationships have - or have not - been successful
customize one’s environment to be comfortable and accommodating to the strengths and challenges of the disorder
ask for accommodations at work
pursue work that is more suitable.

It is always important to remember that no person is a diagnosis, and that no diagnosis is the person. AS or HFA is merely one quality of an individual. The person will have many other traits and aspects of his or her personality. Parents and teachers are encouraged to learn about the child FIRST, and then explore the way the diagnosis affects his or her functioning.

In a nutshell, labels are useful as a tool. However, as we all know, some people use labels as a weapon.

Our experience is that if the information is presented right to the educators, it only helps.

Anyone who has spent a little time in the classroom with my kids figures out a) that they are b"H quite bright, and b) that they are quirky. It's helpful for them to know why and what the quirks are about.

Otherwise, they might think that I just have no parenting skills, and if they come down hard on my kids, they'll whip them into shape. Um, no.

Each year, I offer teachers a summary of how the child ticks, and what strategies have been shown to work. I can point out the strengths as well as the weaknesses, and the areas of growth, so that the teachers see that with structure and patience, growth can happen.