Need to hear from parents of kids diagnosed later in life

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Hi there,

I have posted a few times on the forums here regarding my 8.5 year old son and the challenges we face with him. Right now, I really need to hear from those parents whose kids were diagnosed later in their childhood, like around 9, 10, 11, 12, etc. Our son has so many characteristics but we cannot get the professionals to move beyond Anxiety and ADHD. We've started working with a speech path, and with the basic language assessment results, our mental health clinician has finally figured out there is something neurological going on, not just anxiety as she has always believed. We are almost at our wits end with the school as they do not show a whole lot of support for us as they won't listen to what we tell them about how our son responds and learns best.

To be clear, the only reason we want a diagnosis is so we can get the school to actually start working with our son, as they will do hardly anything for him without some kind of designation. I did manage to write a strong enough letter to get him a temporary chronic health designation for the upcoming school year, and finally that will put him under the learning support services instead of the school counselor. However, I don't know what kind of support in the classroom that will translate into. The strategies we use with my son at home are all strategies that are used for kids on the spectrum. I see how they work, I see how he can manage when presented with his options, but I can't get the school to buy in.

I guess I would like to hear from other parents about the whole process they had to go through in order to finally be HEARD by the professionals who are responsible for diagnosis. Our son can do quite well one-to-one so the testing doesn't accurately guage what his real issues are. He met with the psychiatrists nurse for 30 minutes and she said "oh, what a pleasant young man, he just needs to build his confidence and he'll have so many more friends". Sure. We'll get right on that, cause we haven't been trying to do that [i]for the last 5 years[i] already.

My husband and I accept our child for who he is, and we are awed by the gifts he brings to our lives. I was talking with my son the other night and told him that I love him for who he is, and that he makes me a better parent, because I always have to think a little differently and it usually works out to be a good way of thinking. He told me that he was really glad I told him that, cause he never knew that. Aw, he's my lil love bug for sure.

Any advice, support, encouragement you can offer would be greatly appreciated. BTW, we are in BC Canada.

cutiecrystalmom

I don't have any children myself and I do not know about the schooling possibilities in Canada, but I do know that, for myself, I would suggest home schooling if at all possible. The public school experience was pure torture for me and to this day I have a bitter hatred of the public school system, no just for the horrid social environment, but also for the poor academic standards.

My son was diagnosed at age 7.5, and we've been lucky to have a school that was right on it. But all of it, the diagnosis, what people do with it, varies so much that there is no hard and fast answer on how to get the school to listen. They always want to default to believing that problems they don't see in clear relief either do not exist or do not need their investment.

Fortunately, or not, depending on how you look at it, the checklist for each age group, the gaps that will get them to take notice, are constantly changing. What was good enough to fly under the radar isn't always still good enough 2 years down the road. A therapy your child did not qualify for at 10 is not necessarily a therapy your child will not qualify for at 12. So you keep on it. You ask about the standards, you request re-checks, and you stay on it.

I remember the original process well. The need we saw was that something was wrong with my son's ability to write. They pulled together an SST, the SST had the district OT evaluate my son. The OT wrote a letter full of ergonomic suggestions and other things that were utterly useless. I told the teacher that this wasn't going to cut it. I talked to the principal. I was told we could only get actual help if we had an IEP. We were told hand problems weren't enough to get an IEP. So I asked what was, and I asked that my child be evaluated to see if he had one of those conditions, something on the list. They humored me. They did testing. And they found AS.

You keep playing the angles until you get one that works. Firm and persistent. Not pesky, just firm and persistent.

Your not alone, my son dx AS recently age 12yrs had previous dx of ADHD. He found school very difficult and he was unable to communicate this. I would find him very stressed out, mixed bag of emotions, when I would pick him up from school meltdowns everyday. I spoke with many teachers at his primary school only to be told that he was fine, had no difficulties or any issues for concern.

His dx was given after he finished primary school, He started post primary, he had been attending play therapy for about a year this allow him to express and communicate to me, but he would keep telling me I didn't understand. In primary and post primary he had taken the standardised test from dept of education this always showed that he had low learning ability the schools suggest that I ignore the results as he was doing much better in the classroom.

He had a really stressful 1st year suffering from panic attacks, going to the bathroom on his own crying at school, lots of sensory overload, problems with his locker, organisation fell apart, returning home meltdowns/ threatening self harm and suicide. I feel if he didn't attend the play therapy he would have still found it difficult to let me know what was going on.

The school didn't pick up on any of these issues, I had to demand resource teaching for him, due to his ADHD dx I was able to get some hours of resources and then more hours after his AS dx. But the school felt he didn't need them, I gave them work that was recommended by his speech and language therapist to help with his language difficulties. This was not implemented although they told me he was working on it.

Its a very difficult battle when the school doesn't pick up on the difficulties and as he is unable to express what is going on and will only answer question for example, is there anything wrong all good, he will only assume the question means at that moment etc.

He returns on the 29th August and I had to be Firm and persistent with the principal like DW_a_mom suggested I have a meeting on the same day with a psychologist from the dept of education, principal, occupational therapist, psychiatrist from local services, year teacher and resource teacher. This has taken 5 years to reach this point.

Hopefully we can help to make school a much more happier place, my son is already refusing to return. I could think about changing schools but I feel it wont matter he just finds school any school stressful, so trying to address his needs at his present school is the best option I feel. I have thought about home schooling, but there is the social side to consider, also my son has ADHD he will be bored out of his mind I don't think it would be the best option.

Not sure if I have been of any help but its a matter of not stopping until they listen.

Good Luck!

Consider getting a non-school diagnosis. That will help your own understanding and will probaby arm you for getting what you need out of the school. My son was diagnosed through a private counselor, though I haven't had the school problem since we homeschool.

Thanks everyone for the replies. Firm and persistent is a good way of putting things. I know I can do that

It is so hard to keep going some days, I guess right now I am in my own anxious anticpation of school starting phase. I know I am going to have to do the school stuff on my own and that is a bit scary. My husband, who is working out of town, was supposed to come home this Wednesday but now will be gone until the end of October (with three weeks off starting the 21st of Aug), this after already being away since May. It has been a long summer, and looks to be a bit of a long fall. I did desperately try to change schools for my son for this upcoming year, but the ones I wanted him to go to are all full. So we are sticking with what we know right now, hoping the private school option becomes available for the start of grade 5. I have to find some way to trust the school, and my husband would be so much better at that!

I have thought of home schooling, however at this point it is incredibly difficult to get my son out of the house for fun things, and I worry if I pull him from school I might not ever get him back in

aann- we have pursued private options, where we are at the school doesn't have anything to do with diagnosis. Unfortunately, the child psych we saw who took ASD off the table, also does the screening for public assessments and has taken my son's name off their list. Based on his 45 min interview. I'm so disappointed about that, because private is again our only option. He has received adhd dx 3 different times: first time after a 15min interview with a ped; second time based on a computer screening test, even though home and school did not indicate attention issues; and third by the child psych based on 30 min observation by nurse and 15min observation by him. Not thorough enough for me. School still doesn't see adhd as an issue. Yes, he moves about the classroom, but when the teacher asked him follow up questions, he answered every one correctly. He is paying attention, it just doesn't look like it. He met expectations in all areas at school with the exception of oral (speaking/listening), writing, math and fine arts. Excels at reading, tests with high reading comprehension, met requirements for social studies, science, etc. He tends to shut down when presented with new concepts, has a verbal refusal pattern ("I don't want to do it. This is stupid." This is what he says whenever anything unexpected happens). needs time to process what is expected, and sometimes have things explained in an alternate, more concrete way. No issues with doing his homework at home, in fact it would take less time for him to do his homework than his sister.

I could go on, but I won't tonight. Thanks everyone for the encouragement. I'll keep plugging away.

cutiecrystalmom

I don't know much about the Canadian health care system except that liberal Americans revel it and Canadians seem to be chronically frustrated with it. If you have a few thousand dollars and are near the border, however, you can always take a visit to a research university autism center in the US and have them do a autism assessment. You may even be able to do this in Canada if you pay out of pocket. Or perhaps you can even get the Canadian government to pay for it, but that would be the appropriate testing to do.

You might also call the clinician who did the original assessment and ask him to explain to you why he feels your son is not on the spectrum.

Keep in mind, your son actually might not be on the spectrum but he could have a learning disorder and I don't see why he shouldn't receive accommodations based on the diagnoses he does have.

The test you're looking for is the ADOS (I think it stands for Autism Diagnostic Observation Schedule). Check to see if the psych administered it. If not, look for a developmental pediatrician or psychologist and ask specifically for them to administer this test.

What do you think the school would do differently if you had the diagnosis?

Thanks Chronos and zette.

I read both his reports again last night. He has had the ADOS when he was seven and sailed through it. In a controlled 1:1 adult environment, he does well. (Even in the psych nurses office, they were talking about how quickly he warmed up, well, yeah, you had a big marble factory toy that interested him, and pokemon cards posted all over the filing cabinet). In the commissioned report there was no mention of his lack of eye contact, and his hand flapping/jumping with arms flailing was said to be "not significant enough for the spectrum". The assessor did not mention any of the sensory issues we face, other than the chewing. Not the clothing sensitivity, not the movement issues, nothing. All the recommendations were for social thinking/social skills groups, plus CBT for anxiety. The child psych we saw said no asd because he was able to use gestures, have a conversation and his lack of eye contact was more related to adhd. The thing is, my kid can sit and have a stilted conversation with someone and it is like he is doing everything to avoid looking at the person, but he is maintaining the conversation.

Sigh. I think I am making myself crazy with this. And probably I will step back a bit after today.

With regards to the school, I am fortunate in that I have connected with the Autism Teacher Specialist for the District, and even though my son does not have a diagnosis, she is willing to help us with providing recommendations and strategies to the school. She has also provided us with things to work on at home with him. What the dx would do is give us a solid designation that the school would then be required to do something with. One of the things that has been brought up has been "well, he doesn't have a designation, so there's only so much we can do", and "we'd love to give him an aide, but we just don't have the funding to do so". I get that, but I also know their job is to teach ALL kids at that school - a dx just gives me another piece of validation that my son has different learning needs that they need to address. I know a piece of paper is only as good as the people who implement the recommendations on that piece of paper, but I would hope it would make something of a difference. At least they would have the "funding" and have more opportunities to implement the various recommendations. Also, a spectrum dx would give us access to in school OT/Speech, so we would not then have to pay out of pocket for these (which we have been doing, and the school says, well, we can't give your son daily movement breaks because we don't have someone that can supervise him. To their credit, they did find some aide time to take him to the "physical movement room" - after lunch hour, when he'd been outside running around for 40 minutes already, and during his favorite time - silent reading).

You're right Chronos, it is absolutely possible he is not on the spectrum. I think learning disabilities are a real issue as well. Question for anyone. With ADHD, does your child excel in some areas (reading, social, science) but be absolutely way behind in others? or are the issues more across the board? curious about that.

Have you read Wrightslaw From Emotions to Advocacy? While the laws will be different in Canada, there's some excellent chapters in there on how to document the troubles your son is having and build a case for getting the services he needs.

I just joined so I hope this post goes where it is supposed to!
My dd is going into Grade 7 (we're in Atlantic Canada) and she got her AS dx a few days before turning 12, i.e. a couple of weeks ago. I'm still sorting things out, but since problems were identified by the school at the beginning of middle school (last year) I at least know that I have to make an appt the week before school starts and bring them the report, which is being finalized. We found the school was not very interested or able to identify the causes of her academic challenges so went the private route, with a psychologist recommended by my oldest daughter, who works as an autism intervention worker. It's been nearly a year, but we probably needed all that time to adjust anyway. You'd think we would have identified the AS a long time ago, and indeed my older daughter and I discussed it a lot, but we weren't sure the dx and label was going to be helpful. I have two sons who, according to their doctor, probably have ADHD, but we've coped ok with them. With our 12 year old, we felt we needed the dx mainly for school. I am going to give it a try this year, and if the year goes as badly as last year I'll homeschool and take the pressure off.

one word to solve your school probs: homeschool.

I wish my mom homeschooled me...I suffered so much and developed so many behavior problems do to the stress and social probs I had.

Jojo

I'm not a parent but my brother was diagnosed as autistic late, I think he was 11 or 12. Diagnosis ultimately meant that he was able to transition to doing high school maths and eventually high school itself early to get him working at his academic level. The high school particularly was very helpful with this. I understand it's a little different when a child needs extending rather than extra help, but it did make the school more proactive about treating him differently and meeting his needs.

My son was dx in March at age 11. He had some other issues which interfered with his dx but we all recognized he had little quirks that we just thought were all his. He was dx with bipolar, RAD (was in 20 homes before 20 months when we met him) and learning disabilities. But he had a change in meds which caused him to have a reaction which led to weaning off all meds and then he destabilized and was put in a short term residential hospital. He got dx there with OCD and Aspergers which made more sense and painted a better picture of him than anything we've encountered so far.